?????

[Guest guest]

--

Cool! I will have to try that. He is sneezing his head off, even on

all of the allergy meds and stuff, and he was miserable last night

after we got home from Urgent Care.

I don't know what I'm going to do with the school! The nurse should

have called me yesterday, but since we don't have a 504 or IEP in

place yet, they don't feel the need to call me when my kids go to the

nurse. They think if they look " ok " it doesn't matter. I had a REALLY

long talk with the nurse this morning on the phone and I think I

finally hit a nerve with her about what's going on. They just simply

don't understand this stuff. And why would they? I didn't until my

kids had a diagnosis, I had never heard of it either, and my kids are

the first kids in the school to have it, so they've never had to deal

with it before mine. So frustrating. But we will get through it. I

talked to last night for 2 hours and she gave me lots of advice

about the IEP, since she is a teacher (thanks !) and I just need

to be a witch with the school I guess and get this done before the

year is over and before my oldest is in middle school. Man, this

parenting thing really should come with an owner's manual, but since

it doesn't, I'm glad there are boards like this....

> > > > I joined this group thinking it was supposed to be for

> > > support. I have

> > > > posted a few times and gotten no reply. I realize that my kids

> aren't

> > > > as sick as some of the others, but none the less, do have similar

> > > things.

> > > > We have had difficulties with stuff their whole lives, and it

> has been

> > > > frustrating trying to get the Dr's here in GA to listen to our

> > > > concerns. No one would test them, even after me asking them

to, for

> > > > any kind of immune deficiency. I have asked them a few times

> over the

> > > > years and they never would. So once we got our diagnosis last

month,

> > > > and I found this group, I thought it would be a good release.

> And then

> > > > when I never get any replies, it is just discouraging. Like I

> said, I

> > > > know my kids aren't as sick as some of your kids are, but they

> do have

> > > > a PID, and it is all new and scary for us still. It seems that not

> > > > many people in GA even know about this, and we are the first

in our

> > > > school to have this. I am having to walk the school system through

> > > > everything and school them about it all. My kids have missed a

> lot of

> > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

> trying to

> > > > get 504's.

> > > >

> > > > If you guys don't think I need to be a part of your group, then I

> > > > understand, but can you direct me to another board? I do need a

> > > > support group where I can vent and talk and learn about this

> stuff. I

> > > > have questions and concerns and fears like everyone else with

a new

> > > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > > murmur, reflux, recurrent croup that is now asthma, recurrent ear

> > > > infections, etc I have had to learn about stuff and cope, and

I just

> > > > need a place where I can find some support.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > When everything seems to be going against you, remember the

airplane

> > > takes off against the wind, not with it.

> > > > --Henry Ford

> > > >

> > > > ------------ --------- --------- ---

> > > > Be a better friend, newshound, and know-it-all with

Mobile.

> > > Try it now.

> > > >

> > > >

[Guest guest]

---

HI Deska, I just wanted to offer another route with the school,

besides the witch idea:)(although you sometimes need to be). Ive seen

a lot of parents of special needs kiddos go that way, even my brother

and SIL have done that, feeling it was the best way to get their kids

services. Ive been firm, certainly, and at times bossy, but for the

most part, I try REALLY hard to be kind, understanding, bring little

gifts for the staff, ask after their families, help out when I can in

class or for other staff working with my kids, and generally be as

nice as I possibly can. The reason I do that, is bc Ive found I get a

lot m ore help when I act that way.......school staff are going to

react and try harder to help a parent who goes out of their way to be

extra nice, than the parent who is demanding, swearing, and whatever.

I dont always feel like being nice:), lol, but I try to make myself do

it. Once a relationship with school staff is severed, its nearly

impossible to undo the damage, and then we wont be getting

anywhere....the reputation will follow through the next yr, and the

next. Just my thoughts. Its not always our first instinct.....but

sometimes it really pays off.

valarie

In , " Deska " <deska66@...> wrote:

>

> --

>

> Cool! I will have to try that. He is sneezing his head off, even on

> all of the allergy meds and stuff, and he was miserable last night

> after we got home from Urgent Care.

>

> I don't know what I'm going to do with the school! The nurse should

> have called me yesterday, but since we don't have a 504 or IEP in

> place yet, they don't feel the need to call me when my kids go to the

> nurse. They think if they look " ok " it doesn't matter. I had a REALLY

> long talk with the nurse this morning on the phone and I think I

> finally hit a nerve with her about what's going on. They just simply

> don't understand this stuff. And why would they? I didn't until my

> kids had a diagnosis, I had never heard of it either, and my kids are

> the first kids in the school to have it, so they've never had to deal

> with it before mine. So frustrating. But we will get through it. I

> talked to last night for 2 hours and she gave me lots of advice

> about the IEP, since she is a teacher (thanks !) and I just need

> to be a witch with the school I guess and get this done before the

> year is over and before my oldest is in middle school. Man, this

> parenting thing really should come with an owner's manual, but since

> it doesn't, I'm glad there are boards like this....

>

>

>

>

> > > > > I joined this group thinking it was supposed to be for

> > > > support. I have

> > > > > posted a few times and gotten no reply. I realize that my kids

> > aren't

> > > > > as sick as some of the others, but none the less, do have

similar

> > > > things.

> > > > > We have had difficulties with stuff their whole lives, and it

> > has been

> > > > > frustrating trying to get the Dr's here in GA to listen to our

> > > > > concerns. No one would test them, even after me asking them

> to, for

> > > > > any kind of immune deficiency. I have asked them a few times

> > over the

> > > > > years and they never would. So once we got our diagnosis last

> month,

> > > > > and I found this group, I thought it would be a good release.

> > And then

> > > > > when I never get any replies, it is just discouraging. Like I

> > said, I

> > > > > know my kids aren't as sick as some of your kids are, but they

> > do have

> > > > > a PID, and it is all new and scary for us still. It seems

that not

> > > > > many people in GA even know about this, and we are the first

> in our

> > > > > school to have this. I am having to walk the school system

through

> > > > > everything and school them about it all. My kids have missed a

> > lot of

> > > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

> > trying to

> > > > > get 504's.

> > > > >

> > > > > If you guys don't think I need to be a part of your group,

then I

> > > > > understand, but can you direct me to another board? I do need a

> > > > > support group where I can vent and talk and learn about this

> > stuff. I

> > > > > have questions and concerns and fears like everyone else with

> a new

> > > > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > > > murmur, reflux, recurrent croup that is now asthma,

recurrent ear

> > > > > infections, etc I have had to learn about stuff and cope, and

> I just

> > > > > need a place where I can find some support.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > When everything seems to be going against you, remember the

> airplane

> > > > takes off against the wind, not with it.

> > > > > --Henry Ford

> > > > >

> > > > > ------------ --------- --------- ---

> > > > > Be a better friend, newshound, and know-it-all with

> Mobile.

> > > > Try it now.

> > > > >

> > > > >

[Guest guest]

Hey,

I also want to tell you that everything that is said can be placed in you

child's " PERMANET " record! (Be nice to everyone but scare the nurse in question!

LOL) Seriously Deska, be nice, but make sure they realize they have screwed up

royally. Get your DR to fill out that form I sent. It scares them into action-at

least it did for us. It doesn't hurt to let them know that their every wrong

move could lead to a life threatning mistake on their part! We were very nice

after pointing that out to our school nusre and told her, because of this, I

don't want to put you in a bad situation. Just let call us, and we will

take that responsibility off your shoulders. LOL, worked like a charm!

@...: osdbmom@...: Thu, 8 May 2008 16:36:59

+0000Subject: Re: ?????

---HI Deska, I just wanted to offer another route with the school,besides the

witch idea:)(although you sometimes need to be). Ive seena lot of parents of

special needs kiddos go that way, even my brotherand SIL have done that, feeling

it was the best way to get their kidsservices. Ive been firm, certainly, and at

times bossy, but for themost part, I try REALLY hard to be kind, understanding,

bring littlegifts for the staff, ask after their families, help out when I can

inclass or for other staff working with my kids, and generally be asnice as I

possibly can. The reason I do that, is bc Ive found I get alot m ore help when I

act that way.......school staff are going toreact and try harder to help a

parent who goes out of their way to beextra nice, than the parent who is

demanding, swearing, and whatever.I dont always feel like being nice:), lol, but

I try to make myself doit. Once a relationship with school staff is severed, its

nearlyimpossible to undo the damage, and then we wont be gettinganywhere....the

reputation will follow through the next yr, and thenext. Just my thoughts. Its

not always our first instinct.....butsometimes it really pays off.valarieIn

, " Deska " <deska66@...> wrote:>> -- > > Cool! I

will have to try that. He is sneezing his head off, even on> all of the allergy

meds and stuff, and he was miserable last night> after we got home from Urgent

Care. > > I don't know what I'm going to do with the school! The nurse should>

have called me yesterday, but since we don't have a 504 or IEP in> place yet,

they don't feel the need to call me when my kids go to the> nurse. They think if

they look " ok " it doesn't matter. I had a REALLY> long talk with the nurse this

morning on the phone and I think I> finally hit a nerve with her about what's

going on. They just simply> don't understand this stuff. And why would they? I

didn't until my> kids had a diagnosis, I had never heard of it either, and my

kids are> the first kids in the school to have it, so they've never had to deal>

with it before mine. So frustrating. But we will get through it. I> talked to

last night for 2 hours and she gave me lots of advice> about the IEP,

since she is a teacher (thanks !) and I just need> to be a witch with the

school I guess and get this done before the> year is over and before my oldest

is in middle school. Man, this> parenting thing really should come with an

owner's manual, but since> it doesn't, I'm glad there are boards like this.... >

> > > >

> > > > I joined this group thinking it was supposed to be for> > > > support. I

have> > > > > posted a few times and gotten no reply. I realize that my kids> >

aren't> > > > > as sick as some of the others, but none the less, do

havesimilar> > > > things. > > > > > We have had difficulties with stuff their

whole lives, and it> > has been> > > > > frustrating trying to get the Dr's here

in GA to listen to our> > > > > concerns. No one would test them, even after me

asking them> to, for> > > > > any kind of immune deficiency. I have asked them a

few times> > over the> > > > > years and they never would. So once we got our

diagnosis last> month,> > > > > and I found this group, I thought it would be a

good release.> > And then> > > > > when I never get any replies, it is just

discouraging. Like I> > said, I> > > > > know my kids aren't as sick as some of

your kids are, but they> > do have> > > > > a PID, and it is all new and scary

for us still. It seemsthat not> > > > > many people in GA even know about this,

and we are the first> in our> > > > > school to have this. I am having to walk

the school systemthrough> > > > > everything and school them about it all. My

kids have missed a> > lot of> > > > > school, my 6yr old 31 days, my 10 yr old

20 days, and we are> > trying to> > > > > get 504's. > > > > > > > > > > If you

guys don't think I need to be a part of your group,then I> > > > > understand,

but can you direct me to another board? I do need a> > > > > support group where

I can vent and talk and learn about this> > stuff. I> > > > > have questions and

concerns and fears like everyone else with> a new> > > > > diagnosis does.

Through all of our stuff, tracheomalacia, heart> > > > > murmur, reflux,

recurrent croup that is now asthma,recurrent ear> > > > > infections, etc I have

had to learn about stuff and cope, and> I just> > > > > need a place where I can

find some support. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

> > > > When everything seems to be going against you, remember the> airplane> >

> > takes off against the wind, not with it.> > > > > --Henry Ford> > > > > > >

> > > ------------ --------- --------- ---> > > > > Be a better friend,

newshound, and know-it-all with > Mobile. > > > > Try it now.> > > > > > >

> > >

[Guest guest]

Deska and others,

I too am one of those that reads but doesn't post a whole lot. I feel your

frustration about the doctor's only testing one child versus the other.

They did that with mine, too, because they feel like my kids are the same

since they have a genetic disorder, and they can take more blood from the 5

year old than the 3 year old. That's not really a good explanation in your

kids' case, though. We are now going back and testing the younger one to be

sure of her neutropenia issues. In addition to low IgG and IgM, they have

cyclic neutropenia, a metabolic disorder called glycogen storage disease

(liver and muscle disease), asthma, and reflux. also has had

several seizures and Meredith has peptic ulcer disease and now they suspect

a bleeding disorder because her PTT is way off. has been on IVIG

for over 2.5 years and Meredith has been for 6 months now. They both have

feeding tubes that they get most of their nutrition from (they are still

allowed to eat, though) and portacaths for IVs and blood draws, which is a

lifesaver for us.

I'm sorry I can't help offer more suggestions - just to be persistent in

advocating for your kids' care. It's not always an easy thing to do, that's

for sure. IMO, unless you're testing titer levels and re-vaccinating for a

response, you are missing a big part of the picture and how best to

determine to keep your kids healthy.

Feel free to read and post on our caringbridge site if you want to know more

about us.

www.caringbridge.org/visit/mhobbs

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

Carmel, IN

_____

From: [mailto: ] On Behalf Of

Deska

Sent: Wednesday, May 07, 2008 10:13 AM

Subject: Re: ?????

Thanks guys for your replies!

My GI Dr did say that the low IGA levels might interfere with the

testing for Celiac, but from what I read about it, he doesn't present

a lot of the symptoms, our main concern is the reflux. He does want to

do an endoscopy, but would rather wait until our ENT decides if he is

going to do another set of tubes in the fall (even though our current

set is still in ... but with more hearing damage I just don't know)

My other question was this ...

The immuno said for my oldest that she wanted to do the Pneumovax

vaccine to check his titers, but didn't even mention it for my younger

son, who has more problems, would she not need to do this for both of

them???

Maybe I've just had a rough week and was overly sensitive, so I

apologize as well. I've sat at home this week and asked my friend

, who is also on this board, did she ever just go to her room and

cry when no one else was looking.

I know my kids could be worse, but this stuff can get so overwhelming

when I am trying to work full time, and keep their lives as " normal "

as possible, as the Dr's haven't said to limit their activities, and

they are still playing baseball, etc as much as they can and doing

school as much as they can. Winter sports don't go over well for my

little guy, b/c generally he's too sick in the winter to participate.

So my springs are so jammed packed and now working/ball schedules and

now all of these appts I've just been so overwhelmed by all of it and

not getting much support from my mom ... and my husband thinks it's

all sort of " odd " he's not sure what he believes as far as diagnosis

goes just yet.

Thanks for the replies today though, I do appreciate it!

Deska

> > > I joined this group thinking it was supposed to be for

> > support. I have

> > > posted a few times and gotten no reply. I realize that my kids

aren't

> > > as sick as some of the others, but none the less, do have similar

> > things.

> > > We have had difficulties with stuff their whole lives, and it

has been

> > > frustrating trying to get the Dr's here in GA to listen to our

> > > concerns. No one would test them, even after me asking them to, for

> > > any kind of immune deficiency. I have asked them a few times

over the

> > > years and they never would. So once we got our diagnosis last month,

> > > and I found this group, I thought it would be a good release.

And then

> > > when I never get any replies, it is just discouraging. Like I

said, I

> > > know my kids aren't as sick as some of your kids are, but they

do have

> > > a PID, and it is all new and scary for us still. It seems that not

> > > many people in GA even know about this, and we are the first in our

> > > school to have this. I am having to walk the school system through

> > > everything and school them about it all. My kids have missed a

lot of

> > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

trying to

> > > get 504's.

> > >

> > > If you guys don't think I need to be a part of your group, then I

> > > understand, but can you direct me to another board? I do need a

> > > support group where I can vent and talk and learn about this

stuff. I

> > > have questions and concerns and fears like everyone else with a new

> > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > murmur, reflux, recurrent croup that is now asthma, recurrent ear

> > > infections, etc I have had to learn about stuff and cope, and I just

> > > need a place where I can find some support.

> > >

> > >

> > >

> > >

> > >

> > >

> > > When everything seems to be going against you, remember the airplane

> > takes off against the wind, not with it.

> > > --Henry Ford

> > >

> > > ---------------------------------

> > > Be a better friend, newshound, and know-it-all with Mobile.

> > Try it now.

> > >

> > >

[Guest guest]

/ --

I have been nice, very nice, up until now, and even this morning I kept my

composure, but was just more assertive about what was going on with the boys(I

have always been the one to send in gifts and offer time and volunteer as room

mom and take snacks for the class, etc) I told the nurse about EVERYTHING we've

been through. Reiterated all of the stuff from the past, we had a nice 30-45min

conversation and she was very apologetic by the time we hung up. I think she

just didn't realize what it all entailed. And the fact that Jayden wasn't at

school today, made her more concerned. She says she'll call now with everything,

but she's still not being truthful about the events of yesterday. She didn't

check his temperature, she didn't even ask to find out what was wrong, she

looked at him and said it " looked like allergies " and sent him back to class.

That was it. But whatever, I'm over it now, we're waiting on the strep culture,

being bounced around from one

Dr to the other and just waiting ... as you guys worded it last week ... sick,

but not. *sigh*

He's still running a bit of a fever and complaining with a really bad headache

and the motrin isn't helping it at all ... so we just have to deal with him

hurting. Not fun for a mom.

Thanks ladies so much!

Deska

Re: ?????

---HI Deska, I just wanted to offer another route with the school,besides the

witch idea:)(although you sometimes need to be). Ive seena lot of parents of

special needs kiddos go that way, even my brotherand SIL have done that, feeling

it was the best way to get their kidsservices. Ive been firm, certainly, and at

times bossy, but for themost part, I try REALLY hard to be kind, understanding,

bring littlegifts for the staff, ask after their families, help out when I can

inclass or for other staff working with my kids, and generally be asnice as I

possibly can. The reason I do that, is bc Ive found I get alot m ore help when I

act that way.......school staff are going toreact and try harder to help a

parent who goes out of their way to beextra nice, than the parent who is

demanding, swearing, and whatever.I dont always feel like being nice:), lol, but

I try to make myself doit. Once a relationship with school staff is severed, its

nearlyimpossible to undo

the damage, and then we wont be gettinganywhere....the reputation will follow

through the next yr, and thenext. Just my thoughts. Its not always our first

instinct.....butsometimes it really pays off.valarieIn ,

" Deska " <deska66@...> wrote:>> -- > > Cool! I will have to try that. He

is sneezing his head off, even on> all of the allergy meds and stuff, and he was

miserable last night> after we got home from Urgent Care. > > I don't know what

I'm going to do with the school! The nurse should> have called me yesterday, but

since we don't have a 504 or IEP in> place yet, they don't feel the need to call

me when my kids go to the> nurse. They think if they look " ok " it doesn't

matter. I had a REALLY> long talk with the nurse this morning on the phone and I

think I> finally hit a nerve with her about what's going on. They just simply>

don't understand this stuff. And why would they? I didn't until my> kids had a

diagnosis, I had

never heard of it either, and my kids are> the first kids in the school to have

it, so they've never had to deal> with it before mine. So frustrating. But we

will get through it. I> talked to last night for 2 hours and she gave me

lots of advice> about the IEP, since she is a teacher (thanks !) and I just

need> to be a witch with the school I guess and get this done before the> year

is over and before my oldest is in middle school. Man, this> parenting thing

really should come with an owner's manual, but since> it doesn't, I'm glad there

are boards like this.... > > > > > > > > > I joined this group thinking it was supposed to be for> > > >

support. I have> > > > > posted a few times and gotten no reply. I realize that

my kids> > aren't> > > > > as sick as some of the others, but none the less, do

havesimilar> > > > things. > > > > > We have had difficulties with stuff their

whole lives, and it> > has been> > > > > frustrating trying to get the Dr's here

in GA to listen to our> > > > > concerns. No one would test them, even after me

asking them> to, for> > > > > any kind of immune deficiency. I have asked them a

few times> > over the> > > > > years and they never would. So once we got our

diagnosis last> month,> > > > > and I found this group, I thought it would be a

good

release.> > And then> > > > > when I never get any replies, it is just

discouraging. Like I> > said, I> > > > > know my kids aren't as sick as some of

your kids are, but they> > do have> > > > > a PID, and it is all new and scary

for us still. It seemsthat not> > > > > many people in GA even know about this,

and we are the first> in our> > > > > school to have this. I am having to walk

the school systemthrough> > > > > everything and school them about it all. My

kids have missed a> > lot of> > > > > school, my 6yr old 31 days, my 10 yr old

20 days, and we are> > trying to> > > > > get 504's. > > > > > > > > > > If you

guys don't think I need to be a part of your group,then I> > > > > understand,

but can you direct me to another board? I do need a> > > > > support group where

I can vent and talk and learn about this> > stuff. I> > > > > have questions and

concerns and fears like everyone else with> a new> > > > > diagnosis does.

Through all of our stuff,

tracheomalacia, heart> > > > > murmur, reflux, recurrent croup that is now

asthma,recurrent ear> > > > > infections, etc I have had to learn about stuff

and cope, and> I just> > > > > need a place where I can find some support. > > >

> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > When everything

seems to be going against you, remember the> airplane> > > > takes off against

the wind, not with it.> > > > > --Henry Ford> > > > > > > > > > ------------

--------- --------- ---> > > > > Be a better friend, newshound, and know-it-all

with > Mobile. > > > > Try it now.> > > > > > > > > > [Non-text portions

of this message have been removed]> > > > >> > > > > > > > > > > > > > > > > > >

> > > >> >>__________________________________________________________> > > > Be

a better friend, newshound, and > > > > know-it-all with Mobile. Try it

now. > > > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > > > > >

> > [Non-text

portions of this message have been removed]> > > >> > >> >>

_________________________________________________________________

Get Free (PRODUCT) RED™ Emoticons, Winks and Display Pics.

http://joinred.spaces.live.com?ocid=TXT_HMTG_prodredemoticons_052008

[Guest guest]

,

What form did I miss it? I've got one starting Kindergarten in the fall.

Preschool has been great and understands his issues, but I was less

impressed with how the school would handle it after being at registration.

Re: ?????

---HI Deska, I just wanted to offer another route with the school,besides

the witch idea:)(although you sometimes need to be). Ive seena lot of

parents of special needs kiddos go that way, even my brotherand SIL have

done that, feeling it was the best way to get their kidsservices. Ive been

firm, certainly, and at times bossy, but for themost part, I try REALLY hard

to be kind, understanding, bring littlegifts for the staff, ask after their

families, help out when I can inclass or for other staff working with my

kids, and generally be asnice as I possibly can. The reason I do that, is bc

Ive found I get alot m ore help when I act that way.......school staff are

going toreact and try harder to help a parent who goes out of their way to

beextra nice, than the parent who is demanding, swearing, and whatever.I

dont always feel like being nice:), lol, but I try to make myself doit. Once

a relationship with school staff is severed, its nearlyimpossible to undo

the damage, and then we wont be gettinganywhere....the reputation will

follow through the next yr, and thenext. Just my thoughts. Its not always

our first instinct.....butsometimes it really pays off.valarieIn

, " Deska " <deska66@...> wrote:>> -- > > Cool!

I will have to try that. He is sneezing his head off, even on> all of the

allergy meds and stuff, and he was miserable last night> after we got home

from Urgent Care. > > I don't know what I'm going to do with the school! The

nurse should> have called me yesterday, but since we don't have a 504 or IEP

in> place yet, they don't feel the need to call me when my kids go to the>

nurse. They think if they look " ok " it doesn't matter. I had a REALLY> long

talk with the nurse this morning on the phone and I think I> finally hit a

nerve with her about what's going on. They just simply> don't understand

this stuff. And why would they? I didn't until my> kids had a diagnosis, I

had never heard of it either, and my kids are> the first kids in the school

to have it, so they've never had to deal> with it before mine. So

frustrating. But we will get through it. I> talked to last night for 2

hours and she gave me lots of advice> about the IEP, since she is a teacher

(thanks !) and I just need> to be a witch with the school I guess and

get this done before the> year is over and before my oldest is in middle

school. Man, this> parenting thing really should come with an owner's

manual, but since> it doesn't, I'm glad there are boards like this.... > > >

> > > > > > I

joined this group thinking it was supposed to be for> > > > support. I have>

> > > > posted a few times and gotten no reply. I realize that my kids> >

aren't> > > > > as sick as some of the others, but none the less, do

havesimilar> > > > things. > > > > > We have had difficulties with stuff

their whole lives, and it> > has been> > > > > frustrating trying to get the

Dr's here in GA to listen to our> > > > > concerns. No one would test them,

even after me asking them> to, for> > > > > any kind of immune deficiency. I

have asked them a few times> > over the> > > > > years and they never would.

So once we got our diagnosis last> month,> > > > > and I found this group, I

thought it would be a good release.> > And then> > > > > when I never get

any replies, it is just discouraging. Like I> > said, I> > > > > know my

kids aren't as sick as some of your kids are, but they> > do have> > > > > a

PID, and it is all new and scary for us still. It seemsthat not> > > > >

many people in GA even know about this, and we are the first> in our> > > >

> school to have this. I am having to walk the school systemthrough> > > > >

everything and school them about it all. My kids have missed a> > lot of> >

> > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are> > trying

to> > > > > get 504's. > > > > > > > > > > If you guys don't think I need to

be a part of your group,then I> > > > > understand, but can you direct me to

another board? I do need a> > > > > support group where I can vent and talk

and learn about this> > stuff. I> > > > > have questions and concerns and

fears like everyone else with> a new> > > > > diagnosis does. Through all of

our stuff, tracheomalacia, heart> > > > > murmur, reflux, recurrent croup

that is now asthma,recurrent ear> > > > > infections, etc I have had to

learn about stuff and cope, and> I just> > > > > need a place where I can

find some support. > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

> > > > > > When everything seems to be going against you, remember the>

airplane> > > > takes off against the wind, not with it.> > > > > --Henry

Ford> > > > > > > > > > ------------ --------- --------- ---> > > > > Be a

better friend, newshound, and know-it-all with > Mobile. > > > > Try

it now.> > > > > > > > > > [Non-text portions of this message have been

removed]> > > > >> > > > > > > > > > > > > > > > > > > > > > >>

>>__________________________________________________________> > > > Be a

better friend, newshound, and > > > > know-it-all with Mobile. Try it

now. > > > http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > > >

> > > >

[Guest guest]

The school can fight Dr's orders, were moving this weekend finally and I'm

putting dd in public school again and the school is contesting her 504, the

Dr was very through and as a result her 504 is like 15 pages long and the

school wants to get rid of a lot of it. There even going so far as to

question does she really have celiac disease! They have a note from the Dr

and everything and there still questioning and wanting to know when and how

was she diagnosed? Maybe she's outgrowing it? When was the last time you

actually tried gluten? (which shows they have no idea what there talking

about!) Then it was on to her food allergies and when's the last time we

challenged them? and then they started questioning the CVID and I was

explaining about her lack of B & T cell function and the school nurse starts

in on how that's just not possible or she'd be sick all the time yada yada

yada, ummm... that's why she get those weekly infusions! They don't just

hand out IVIG willy nilly you know. I hate homeschooling with a passion and

after 3 years of trying I feel like I'm entitled to throw in the dam towel

but at this point it feels like fighting to do work is a lot easier

then dealing with these idiots at the school. You can have your letters from

Dr's and stuff and it doesn't always do any good.

RE: Re: ?????

Hey,

I also want to tell you that everything that is said can be placed in you

child's " PERMANET " record! (Be nice to everyone but scare the nurse in

question! LOL) Seriously Deska, be nice, but make sure they realize they

have screwed up royally. Get your DR to fill out that form I sent. It scares

them into action-at least it did for us. It doesn't hurt to let them know

that their every wrong move could lead to a life threatning mistake on their

part! We were very nice after pointing that out to our school nusre and

told her, because of this, I don't want to put you in a bad situation. Just

let call us, and we will take that responsibility off your shoulders.

LOL, worked like a charm!

[Guest guest]

I know you said you tried this and couldn't do it anymore so please don't

feel like I'm pushing this on you. But it's garbage like this that the

schools hash out that make me SO glad we homeschool. I can't believe they

questioned her diagnoses and everything! That's crazy! Between blood sugar

monitoring, tube feeds, immune concerns, etc, I just knew that we were

better off at home. Most kids with GSD need a one-on-one aide to monitor

everything and those are such a battle to get. I just don't have time to

deal with that mess! I started with my oldest at home for 1st grade and

there was a huge difference in how well the other kids did without her

bringing stuff home. I can't imagine all the stuff they would be exposed to

if they were the ones in that environment. I just know I'd be spending way

more time in doctor's offices than we already do.

Mom to , 5 - GSD and PI

Meredith, 3 - GSD and PI

, 8 - healthy

Carmel, IN

_____

From: [mailto: ] On Behalf Of

Sent: Thursday, May 08, 2008 1:08 PM

Subject: Re: Re: ?????

The school can fight Dr's orders, were moving this weekend finally and I'm

putting dd in public school again and the school is contesting her 504, the

Dr was very through and as a result her 504 is like 15 pages long and the

school wants to get rid of a lot of it. There even going so far as to

question does she really have celiac disease! They have a note from the Dr

and everything and there still questioning and wanting to know when and how

was she diagnosed? Maybe she's outgrowing it? When was the last time you

actually tried gluten? (which shows they have no idea what there talking

about!) Then it was on to her food allergies and when's the last time we

challenged them? and then they started questioning the CVID and I was

explaining about her lack of B & T cell function and the school nurse starts

in on how that's just not possible or she'd be sick all the time yada yada

yada, ummm... that's why she get those weekly infusions! They don't just

hand out IVIG willy nilly you know. I hate homeschooling with a passion and

after 3 years of trying I feel like I'm entitled to throw in the dam towel

but at this point it feels like fighting to do work is a lot easier

then dealing with these idiots at the school. You can have your letters from

Dr's and stuff and it doesn't always do any good.

RE: Re: ?????

Hey,

I also want to tell you that everything that is said can be placed in you

child's " PERMANET " record! (Be nice to everyone but scare the nurse in

question! LOL) Seriously Deska, be nice, but make sure they realize they

have screwed up royally. Get your DR to fill out that form I sent. It scares

them into action-at least it did for us. It doesn't hurt to let them know

that their every wrong move could lead to a life threatning mistake on their

part! We were very nice after pointing that out to our school nusre and

told her, because of this, I don't want to put you in a bad situation. Just

let call us, and we will take that responsibility off your shoulders.

LOL, worked like a charm!

[Guest guest]

At this point I would tell them if they dont honor every letter on that paper

and if you hear one more word about it you are going to an atty.... most of the

time that will shut them up. I have a friend that has it and the school was

fighting on it nad she just told them one more word nad she was on the phone

right then....no more issues...

April

<taelon@...> wrote:

The school can fight Dr's orders, were moving this weekend finally and

I'm

putting dd in public school again and the school is contesting her 504, the

Dr was very through and as a result her 504 is like 15 pages long and the

school wants to get rid of a lot of it. There even going so far as to

question does she really have celiac disease! They have a note from the Dr

and everything and there still questioning and wanting to know when and how

was she diagnosed? Maybe she's outgrowing it? When was the last time you

actually tried gluten? (which shows they have no idea what there talking

about!) Then it was on to her food allergies and when's the last time we

challenged them? and then they started questioning the CVID and I was

explaining about her lack of B & T cell function and the school nurse starts

in on how that's just not possible or she'd be sick all the time yada yada

yada, ummm... that's why she get those weekly infusions! They don't just

hand out IVIG willy nilly you know. I hate homeschooling with a passion and

after 3 years of trying I feel like I'm entitled to throw in the dam towel

but at this point it feels like fighting to do work is a lot easier

then dealing with these idiots at the school. You can have your letters from

Dr's and stuff and it doesn't always do any good.

RE: Re: ?????

Hey,

I also want to tell you that everything that is said can be placed in you

child's " PERMANET " record! (Be nice to everyone but scare the nurse in

question! LOL) Seriously Deska, be nice, but make sure they realize they

have screwed up royally. Get your DR to fill out that form I sent. It scares

them into action-at least it did for us. It doesn't hurt to let them know

that their every wrong move could lead to a life threatning mistake on their

part! We were very nice after pointing that out to our school nusre and

told her, because of this, I don't want to put you in a bad situation. Just

let call us, and we will take that responsibility off your shoulders.

LOL, worked like a charm!

When everything seems to be going against you, remember the airplane takes off

against the wind, not with it.

--Henry Ford

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

OH, I feel for y'all. We scared the school to death last year, therefore, I have

not had problems this year. (It also helps that I made an appt and met with the

school nurse B4 school started since he was moving to another school. I had the

note typed up and asked her to read it, then I would answer her questions. She

read the first few lines and asked me if SubQ was like IVIG. Thank you GOD!)

Here is a copy of our letter. I had the drs sign it and they put their phone# on

it also. I sent a copy to his principal, nurse, guidance counselor, and all 7 of

his new teachers. Maybe it was a little over kill, but it got my point across!

Hope this helps!

Dear Ms. ,

My child, , has been diagnosed with a Primary Immune

Deficiency, known as Selective IgG Deficiency. This condition is transmitted

genetically, is not contagious, and does not pose any risk to his peers.

However, since his immune system is compromised due to low antibody production

and lymphocyte defects, my child is at a substantial risk of infection.

Therefore, it is important to notice if he complains of fever, chills, headache,

difficulty breathing or swallowing, or demonstrates general irritability. These

symptoms may not be cause for concern in a child with a healthy Immune system,

but in can be symptoms of a potentionally serious condition, with a fast

onset. Any live vaccines that are given to others are extremely contagious to

him. Conditions such as pneumonia, otitis media, or bronchitis tend to be common

in people with this disorder, lasting longer than usual and occurring more

often. Antibiotics are not always sufficient to suppress the infection.

In order to prevent infection, receives subcutaneous

immunoglobulin. It must be given in 2 hour treatments at home every week. With

out these infusions, my child may develop serious infections causing long

absences from school. Furthermore, if not treated aggressively, the infections

can become life threatening. Therefore, I would appreciate your understanding

of this situation and permit the absence from school, if needed, for him to

receive the care he needs. I also appreciate your understanding in allowing my

child to continue to attend school with the rest of the children and participate

in normal activities.

Please do not hesitate to call me at 549-8104 if you have any

questions. I will be happy to provide more information and facilitate my child’s

performance in school. I have attached a copy of his medical 504 from last year.

Sincerely,

@...: taelon@...: Thu, 8 May 2008 11:08:26

-0700Subject: Re: Re: ?????

The school can fight Dr's orders, were moving this weekend finally and I'm

putting dd in public school again and the school is contesting her 504, the Dr

was very through and as a result her 504 is like 15 pages long and the school

wants to get rid of a lot of it. There even going so far as to question does she

really have celiac disease! They have a note from the Dr and everything and

there still questioning and wanting to know when and how was she diagnosed?

Maybe she's outgrowing it? When was the last time you actually tried gluten?

(which shows they have no idea what there talking about!) Then it was on to her

food allergies and when's the last time we challenged them? and then they

started questioning the CVID and I was explaining about her lack of B & T cell

function and the school nurse starts in on how that's just not possible or she'd

be sick all the time yada yada yada, ummm... that's why she get those weekly

infusions! They don't just hand out IVIG willy nilly you know. I hate

homeschooling with a passion and after 3 years of trying I feel like I'm

entitled to throw in the dam towel but at this point it feels like fighting

to do work is a lot easier then dealing with these idiots at the school.

You can have your letters from Dr's and stuff and it doesn't always do any

good. RE: Re: ?????Hey,I also want to tell you that

everything that is said can be placed in you child's " PERMANET " record! (Be nice

to everyone but scare the nurse in question! LOL) Seriously Deska, be nice, but

make sure they realize they have screwed up royally. Get your DR to fill out

that form I sent. It scares them into action-at least it did for us. It doesn't

hurt to let them know that their every wrong move could lead to a life

threatning mistake on their part! We were very nice after pointing that out to

our school nusre and told her, because of this, I don't want to put you in a bad

situation. Just let call us, and we will take that responsibility off your

shoulders. LOL, worked like a charm!

_________________________________________________________________

Stay in touch when you're away with Windows Live Messenger.

http://www.windowslive.com/messenger/overview.html?ocid=TXT_TAGLM_WL_Refresh_mes\

senger_052008

[Guest guest]

Hi Deska,

I read that last paragraph below and it resonated with me. My little one

has what I consider a milder PIDD as well and a host of other stuff and my older

one has other diagnoses and I completely understand how you are feeling. I work

full time as well and I try to keep our lives " normal " . " Normal " kids do not go

to the doctor once a week or so, ask for their inhaler because they can't breath

at 3 years old, and don't know exactly what order an exam is done in. The

thing is, as time goes on it is our normal. It is overwhelming of course, but

sometimes it is okay. I also understand not having family support. My MIL has

no idea how sick my daughters are and insist on doing things that will harm them

(like give a dairy allergic child frosting that has butter and milk in it). I

have to be with my children with her and this is over two years of this

nonsense.

I hope you have felt heard by the responses. Hang in there, you sound like you

are doing a great job.

I know my kids could be worse, but this stuff can get so overwhelming

when I am trying to work full time, and keep their lives as " normal "

as possible, as the Dr's haven't said to limit their activities, and

they are still playing baseball, etc as much as they can and doing

school as much as they can. Winter sports don't go over well for my

little guy, b/c generally he's too sick in the winter to participate.

So my springs are so jammed packed and now working/ball schedules and

now all of these appts I've just been so overwhelmed by all of it and

not getting much support from my mom ... and my husband thinks it's

all sort of " odd " he's not sure what he believes as far as diagnosis

goes just yet.

Thanks for the replies today though, I do appreciate it!

Deska

> > > I joined this group thinking it was supposed to be for

> > support. I have

> > > posted a few times and gotten no reply. I realize that my kids

aren't

> > > as sick as some of the others, but none the less, do have similar

> > things.

> > > We have had difficulties with stuff their whole lives, and it

has been

> > > frustrating trying to get the Dr's here in GA to listen to our

> > > concerns. No one would test them, even after me asking them to, for

> > > any kind of immune deficiency. I have asked them a few times

over the

> > > years and they never would. So once we got our diagnosis last month,

> > > and I found this group, I thought it would be a good release.

And then

> > > when I never get any replies, it is just discouraging. Like I

said, I

> > > know my kids aren't as sick as some of your kids are, but they

do have

> > > a PID, and it is all new and scary for us still. It seems that not

> > > many people in GA even know about this, and we are the first in our

> > > school to have this. I am having to walk the school system through

> > > everything and school them about it all. My kids have missed a

lot of

> > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

trying to

> > > get 504's.

> > >

> > > If you guys don't think I need to be a part of your group, then I

> > > understand, but can you direct me to another board? I do need a

> > > support group where I can vent and talk and learn about this

stuff. I

> > > have questions and concerns and fears like everyone else with a new

> > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > murmur, reflux, recurrent croup that is now asthma, recurrent ear

> > > infections, etc I have had to learn about stuff and cope, and I just

> > > need a place where I can find some support.

> > >

> > >

> > >

> > >

> > >

> > >

> > > When everything seems to be going against you, remember the airplane

> > takes off against the wind, not with it.

> > > --Henry Ford

> > >

> > > ------------ --------- --------- ---

> > > Be a better friend, newshound, and know-it-all with Mobile.

> > Try it now.

> > >

> > >

[Guest guest]

,

You're right, even though we have a milder PIDD, it is far from a " normal " life.

My husband and I are having a hard time right now, and I really think if he

would just be able to go to some of the appointments with me, he would

understand a little better. I get tired of hearing him say things like " the kids

are just milking this " and " they don't really feel that bad " etc etc etc when he

REALLY doesn't know how they feel. They complain all the time of headaches and

stomach pain, and we can't pinpoint anything " wrong " and they are just " tired "

and grumpy most of the time before other kids are. He just doesn't get it. From

reading up on some of the older posts, I think this is just how " our " kids are.

I'm not positive, but I think so. They complain a lot with their arms and legs

hurting too, and I always chalked it up to growing pains and such (as this was

what I was always told growing up) and I guess now I am starting to see links to

some of their stuff.

i.e. mulluscums that I didn't think were EVER going to go away.

And now the past two days getting passed around from one Dr to the other b/c no

one really felt it was their place to treat Jayden, I'm really frustrated.

Urgent Care said they didn't feel comfortable treating him b/c of the PIDD and

then the pediatrician commented that she thought the amoxil wasn't strong enough

right now since when we changed over to their practice over a month ago, his

lymph nodes in his neck were all swollen, and now they are STILL swollen and

he's been on amoxil for a month, and she wants to change it, but doesn't want to

step on the immunos toes, and when I call the immuno, she doesn't see the need

to change the meds unless the strep culture grows anything, which we won't know

anything about until later today. And my baby is still running a low-grade fever

and has a bad headache that kept him awake most of the night. It's so

frustrating. I'm going on almost no sleep for the week now, and tempers are

short in our house. We need a

vacation I think. Again, hats off to you all that seem to just effortlessly

glide through all of this. You seem to make it all seem second nature. I hope to

get to that point at some point.

Deska

Re: Re: ?????

Hi Deska,

I read that last paragraph below and it resonated with me. My little one has

what I consider a milder PIDD as well and a host of other stuff and my older one

has other diagnoses and I completely understand how you are feeling. I work

full time as well and I try to keep our lives " normal " . " Normal " kids do not go

to the doctor once a week or so, ask for their inhaler because they can't breath

at 3 years old, and don't know exactly what order an exam is done in. The

thing is, as time goes on it is our normal. It is overwhelming of course, but

sometimes it is okay. I also understand not having family support. My MIL has

no idea how sick my daughters are and insist on doing things that will harm them

(like give a dairy allergic child frosting that has butter and milk in it). I

have to be with my children with her and this is over two years of this

nonsense.

I hope you have felt heard by the responses. Hang in there, you sound like you

are doing a great job.

I know my kids could be worse, but this stuff can get so overwhelming

when I am trying to work full time, and keep their lives as " normal "

as possible, as the Dr's haven't said to limit their activities, and

they are still playing baseball, etc as much as they can and doing

school as much as they can. Winter sports don't go over well for my

little guy, b/c generally he's too sick in the winter to participate.

So my springs are so jammed packed and now working/ball schedules and

now all of these appts I've just been so overwhelmed by all of it and

not getting much support from my mom ... and my husband thinks it's

all sort of " odd " he's not sure what he believes as far as diagnosis

goes just yet.

Thanks for the replies today though, I do appreciate it!

Deska

> > > I joined this group thinking it was supposed to be for

> > support. I have

> > > posted a few times and gotten no reply. I realize that my kids

aren't

> > > as sick as some of the others, but none the less, do have similar

> > things.

> > > We have had difficulties with stuff their whole lives, and it

has been

> > > frustrating trying to get the Dr's here in GA to listen to our

> > > concerns. No one would test them, even after me asking them to, for

> > > any kind of immune deficiency. I have asked them a few times

over the

> > > years and they never would. So once we got our diagnosis last month,

> > > and I found this group, I thought it would be a good release.

And then

> > > when I never get any replies, it is just discouraging. Like I

said, I

> > > know my kids aren't as sick as some of your kids are, but they

do have

> > > a PID, and it is all new and scary for us still. It seems that not

> > > many people in GA even know about this, and we are the first in our

> > > school to have this. I am having to walk the school system through

> > > everything and school them about it all. My kids have missed a

lot of

> > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

trying to

> > > get 504's.

> > >

> > > If you guys don't think I need to be a part of your group, then I

> > > understand, but can you direct me to another board? I do need a

> > > support group where I can vent and talk and learn about this

stuff. I

> > > have questions and concerns and fears like everyone else with a new

> > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > murmur, reflux, recurrent croup that is now asthma, recurrent ear

> > > infections, etc I have had to learn about stuff and cope, and I just

> > > need a place where I can find some support.

> > >

> > >

> > >

> > >

> > >

> > >

> > > When everything seems to be going against you, remember the airplane

> > takes off against the wind, not with it.

> > > --Henry Ford

> > >

> > > ------------ --------- --------- ---

> > > Be a better friend, newshound, and know-it-all with Mobile.

> > Try it now.

> > >

> > >

[Guest guest]

Deska, If you go to the IDF website you can download info for the school or you

can also order it. It is excellent. there is one for the nurse as well and even

for the doctors office nurses.

BARBIE

Re: ?????

--

Cool! I will have to try that. He is sneezing his head off, even on

all of the allergy meds and stuff, and he was miserable last night

after we got home from Urgent Care.

I don't know what I'm going to do with the school! The nurse should

have called me yesterday, but since we don't have a 504 or IEP in

place yet, they don't feel the need to call me when my kids go to the

nurse. They think if they look " ok " it doesn't matter. I had a REALLY

long talk with the nurse this morning on the phone and I think I

finally hit a nerve with her about what's going on. They just simply

don't understand this stuff. And why would they? I didn't until my

kids had a diagnosis, I had never heard of it either, and my kids are

the first kids in the school to have it, so they've never had to deal

with it before mine. So frustrating. But we will get through it. I

talked to last night for 2 hours and she gave me lots of advice

about the IEP, since she is a teacher (thanks !) and I just need

to be a witch with the school I guess and get this done before the

year is over and before my oldest is in middle school. Man, this

parenting thing really should come with an owner's manual, but since

it doesn't, I'm glad there are boards like this....

> > > > I joined this group thinking it was supposed to be for

> > > support. I have

> > > > posted a few times and gotten no reply. I realize that my kids

> aren't

> > > > as sick as some of the others, but none the less, do have similar

> > > things.

> > > > We have had difficulties with stuff their whole lives, and it

> has been

> > > > frustrating trying to get the Dr's here in GA to listen to our

> > > > concerns. No one would test them, even after me asking them

to, for

> > > > any kind of immune deficiency. I have asked them a few times

> over the

> > > > years and they never would. So once we got our diagnosis last

month,

> > > > and I found this group, I thought it would be a good release.

> And then

> > > > when I never get any replies, it is just discouraging. Like I

> said, I

> > > > know my kids aren't as sick as some of your kids are, but they

> do have

> > > > a PID, and it is all new and scary for us still. It seems that not

> > > > many people in GA even know about this, and we are the first

in our

> > > > school to have this. I am having to walk the school system through

> > > > everything and school them about it all. My kids have missed a

> lot of

> > > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

> trying to

> > > > get 504's.

> > > >

> > > > If you guys don't think I need to be a part of your group, then I

> > > > understand, but can you direct me to another board? I do need a

> > > > support group where I can vent and talk and learn about this

> stuff. I

> > > > have questions and concerns and fears like everyone else with

a new

> > > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > > murmur, reflux, recurrent croup that is now asthma, recurrent ear

> > > > infections, etc I have had to learn about stuff and cope, and

I just

> > > > need a place where I can find some support.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > When everything seems to be going against you, remember the

airplane

> > > takes off against the wind, not with it.

> > > > --Henry Ford

> > > >

> > > > ------------ --------- --------- ---

> > > > Be a better friend, newshound, and know-it-all with

Mobile.

> > > Try it now.

> > > >

> > > >

[Guest guest]

from Dale, Mom to Katy, CVID, married and grown (almost 24!)

just some random thoughts.

I don't understand the comments about having milder PIDD. I mean, I

understand what you mean -- but I believe it's a misnomer. Katy was

never hospitalized, never critically ill, so I guess she had a milder

PIDD, but in actuality her pain was constant, her infections one right

after another and parenting her was a full time job. There was never a

time during the rough years when I felt that she had a milder PIDD.

Parenting a PIDD kid is tough stuff. Now, there's a lot of parents on

this site whose children are going through multiple diagnosis. Don't

get that confused with PIDD.

> They complain all the time of headaches and stomach pain, and we can't

> pinpoint anything " wrong " and they are just " tired " and grumpy most of

> the time before other kids are.

The best way I can describe what is going on is this:

A person with a normal immune system kills germs before they set up

infection. It's rare for them to get an infection -- but when they do

-- they call it " being sick. " A person with CVID or hypogam doesn't

even know that that germ is in the body until it has set up shop and

multiplied enough to notify the killer-T cells. Therefore they are

" sick " all the time. Their bodies are fighting germs AFTER they have

set up infections (if they have t-cells in tact). IgG causes the body

to prepare for and prevent infections. With low IgG - their is no

preventive stuff going on. All the body can produce is attack after the

fact. So.... for a person walking around with CVID, they are currently

fighting what other people would call " sickness " every single day of

their lives. Their muscles ache, their bones hurt, their eyes hurt,

their tummies hurt, they feel fatigued and crampy and cranky all the

time. Once IgG replacement is started, that should go away -- but is

an indication that their little bodies need help!

When normal, healthy people say " I feel like I'm coming down with

something " I'm reminded that that's the way Katy felt every single day

of her life before we started IVIG. It helped me to be more patient

with her aches and pains.

> And now the past two days getting passed around from one Dr to the other

One of the best things we ever did with Katy was to settle the question

of who was in charge of her care. It took us several years to find that

doctor. When we found a pediatrician who loved Katy and had her best

interest at heart, and I composed a letter to her and then sat

down and met with her and settled the issue.

It went something like this:

We feel that it is imperative that someone who loves and cares for Katy

be in charge of her health care. We want what is absolutely best for

her, and it's not best for her to be cared for by immunologist who only

see her twice a year -- when you see her sometimes weekly. We would

like for you to be her ONLY doctor. We would like for you to help us

make wise decisions for her care. We will see any specialist that you

recommend -- but they can only report back to you -- they cannot treat

her without your permission and feedback. They cannot draw blood! They

cannot prescribe medication. They are to make all recommendations to

you and you will make the final decisions. That way we will have

coordinated care and YOU will be that coordinator -- not us!

I can't tell you how much that helped me. I felt totally safe with this

doctor and when I disagreed with her -- she listened. But for the most

part I could turn the " medical " stuff over to her. She proved to be an

excellent doctor and friend through this tough time. She spent her

sabbaticals at the NIH learning about PIDD even though Katy was her only

PIDD patient. She was just an excellent doctor and I know that God was

blessing us with her. She was the one who ultimately diagnosed Katy and

she was the one who guided through those rough years of beginning

treatment, etc.

We need a vacation I think.

Sorry, but you have to take the kids with you!!! Vacations were

nightmares for us. But then again -- they were totally worth it.

Again, hats off to you all that seem to just

> effortlessly glide through all of this.

We glide because we've been sandpapered by the hard days.

You seem to make it all seem

> second nature. I hope to get to that point at some point.

>

You will! And may God bless you on your journey,

In His service,

dale

[Guest guest]

Dale,

Thanks so much for all of your comments. It makes a lot of sense and

puts things into a different perspective. And believe me, I meant ALL

of us when I said " we need a vacation from all of this " the kids, us,

everyone. We never go away without our kids. It is rare that we go out

to eat dinner without our boys, much less a vacation! (I think the

only time we've ever spent away from them was one night for our

anniversary 2 years ago)

I recently changed pediatricians and I sat down and had a talk with

the practice when I changed asking them who I was supposed to meet

with when the kids were sick, and they felt it would be them, but now

that we have hit our first " hurdle " so to speak, it presents to be a

problem. I am going to have to address this. The immunologist hasn't

started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

and she was hoping to avoid that and be able to do prophylactic

antibiotics and get him through the summer and maybe get him healthier

and stronger before winter got here. I guess only time and prayers

will tell.

I do appreciate your honesty about everything you've dealt with. It

really was a good post and it will definitely help me to look at

things a little differently.

Deska

>

> from Dale, Mom to Katy, CVID, married and grown (almost 24!)

>

> just some random thoughts.

>

>

> I don't understand the comments about having milder PIDD. I mean, I

> understand what you mean -- but I believe it's a misnomer. Katy was

> never hospitalized, never critically ill, so I guess she had a milder

> PIDD, but in actuality her pain was constant, her infections one right

> after another and parenting her was a full time job. There was never a

> time during the rough years when I felt that she had a milder PIDD.

> Parenting a PIDD kid is tough stuff. Now, there's a lot of parents on

> this site whose children are going through multiple diagnosis. Don't

> get that confused with PIDD.

>

> > They complain all the time of headaches and stomach pain, and we

can't

> > pinpoint anything " wrong " and they are just " tired " and grumpy

most of

> > the time before other kids are.

>

> The best way I can describe what is going on is this:

> A person with a normal immune system kills germs before they set up

> infection. It's rare for them to get an infection -- but when they do

> -- they call it " being sick. " A person with CVID or hypogam doesn't

> even know that that germ is in the body until it has set up shop and

> multiplied enough to notify the killer-T cells. Therefore they are

> " sick " all the time. Their bodies are fighting germs AFTER they have

> set up infections (if they have t-cells in tact). IgG causes the body

> to prepare for and prevent infections. With low IgG - their is no

> preventive stuff going on. All the body can produce is attack after

the

> fact. So.... for a person walking around with CVID, they are currently

> fighting what other people would call " sickness " every single day of

> their lives. Their muscles ache, their bones hurt, their eyes hurt,

> their tummies hurt, they feel fatigued and crampy and cranky all the

> time. Once IgG replacement is started, that should go away -- but is

> an indication that their little bodies need help!

> When normal, healthy people say " I feel like I'm coming down with

> something " I'm reminded that that's the way Katy felt every single day

> of her life before we started IVIG. It helped me to be more patient

> with her aches and pains.

>

>

>

> > And now the past two days getting passed around from one Dr to the

other

>

> One of the best things we ever did with Katy was to settle the question

> of who was in charge of her care. It took us several years to find

that

> doctor. When we found a pediatrician who loved Katy and had her best

> interest at heart, and I composed a letter to her and then sat

> down and met with her and settled the issue.

>

> It went something like this:

>

> We feel that it is imperative that someone who loves and cares for Katy

> be in charge of her health care. We want what is absolutely best for

> her, and it's not best for her to be cared for by immunologist who only

> see her twice a year -- when you see her sometimes weekly. We would

> like for you to be her ONLY doctor. We would like for you to help us

> make wise decisions for her care. We will see any specialist that you

> recommend -- but they can only report back to you -- they cannot treat

> her without your permission and feedback. They cannot draw blood!

They

> cannot prescribe medication. They are to make all recommendations to

> you and you will make the final decisions. That way we will have

> coordinated care and YOU will be that coordinator -- not us!

>

> I can't tell you how much that helped me. I felt totally safe with

this

> doctor and when I disagreed with her -- she listened. But for the most

> part I could turn the " medical " stuff over to her. She proved to be an

> excellent doctor and friend through this tough time. She spent her

> sabbaticals at the NIH learning about PIDD even though Katy was her

only

> PIDD patient. She was just an excellent doctor and I know that God was

> blessing us with her. She was the one who ultimately diagnosed Katy

and

> she was the one who guided through those rough years of beginning

> treatment, etc.

>

> We need a vacation I think.

>

> Sorry, but you have to take the kids with you!!! Vacations were

> nightmares for us. But then again -- they were totally worth it.

>

>

> Again, hats off to you all that seem to just

> > effortlessly glide through all of this.

>

> We glide because we've been sandpapered by the hard days.

>

> You seem to make it all seem

> > second nature. I hope to get to that point at some point.

> >

>

> You will! And may God bless you on your journey,

>

> In His service,

> dale

>

[Guest guest]

Deska, from what I have seen over the years the antibody testing with the

Pneumovaccine is the deciding factor for most people of whether they go on the

gamma globulin. If they can make antibodies then they can protect themselves

pretty well with the prophylactic antibiotics. But.... if they either do not

make antibodies or they lose them over time then they are missing a key

component in the immune system. Also keep in mind that it really depends on the

clinical picture ( how sick they are) and I am not speaking of only life

threatening illness but chronic, repeat and ongoing infections that do not get

better without repeated courses of different antibiotics. And in my sons case he

became allergic to 5 classed of antibiotics because had to take so many over and

over again. He does not build antibodies to 14 out of 14 of the serotypes in the

pnuemovaccine. And he also loses the tiny bit he built. But his system seems to

be continuing to change over time.

The immune system as you are finding out is extremely complex so each situation

is different but this has been my experience watching this list and reading

reading and reading online.

BARBIE

Re: ?????

Dale,

Thanks so much for all of your comments. It makes a lot of sense and

puts things into a different perspective. And believe me, I meant ALL

of us when I said " we need a vacation from all of this " the kids, us,

everyone. We never go away without our kids. It is rare that we go out

to eat dinner without our boys, much less a vacation! (I think the

only time we've ever spent away from them was one night for our

anniversary 2 years ago)

I recently changed pediatricians and I sat down and had a talk with

the practice when I changed asking them who I was supposed to meet

with when the kids were sick, and they felt it would be them, but now

that we have hit our first " hurdle " so to speak, it presents to be a

problem. I am going to have to address this. The immunologist hasn't

started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

and she was hoping to avoid that and be able to do prophylactic

antibiotics and get him through the summer and maybe get him healthier

and stronger before winter got here. I guess only time and prayers

will tell.

I do appreciate your honesty about everything you've dealt with. It

really was a good post and it will definitely help me to look at

things a little differently.

Deska

>

> from Dale, Mom to Katy, CVID, married and grown (almost 24!)

>

> just some random thoughts.

>

>

> I don't understand the comments about having milder PIDD. I mean, I

> understand what you mean -- but I believe it's a misnomer. Katy was

> never hospitalized, never critically ill, so I guess she had a milder

> PIDD, but in actuality her pain was constant, her infections one right

> after another and parenting her was a full time job. There was never a

> time during the rough years when I felt that she had a milder PIDD.

> Parenting a PIDD kid is tough stuff. Now, there's a lot of parents on

> this site whose children are going through multiple diagnosis. Don't

> get that confused with PIDD.

>

> > They complain all the time of headaches and stomach pain, and we

can't

> > pinpoint anything " wrong " and they are just " tired " and grumpy

most of

> > the time before other kids are.

>

> The best way I can describe what is going on is this:

> A person with a normal immune system kills germs before they set up

> infection. It's rare for them to get an infection -- but when they do

> -- they call it " being sick. " A person with CVID or hypogam doesn't

> even know that that germ is in the body until it has set up shop and

> multiplied enough to notify the killer-T cells. Therefore they are

> " sick " all the time. Their bodies are fighting germs AFTER they have

> set up infections (if they have t-cells in tact). IgG causes the body

> to prepare for and prevent infections. With low IgG - their is no

> preventive stuff going on. All the body can produce is attack after

the

> fact. So.... for a person walking around with CVID, they are currently

> fighting what other people would call " sickness " every single day of

> their lives. Their muscles ache, their bones hurt, their eyes hurt,

> their tummies hurt, they feel fatigued and crampy and cranky all the

> time. Once IgG replacement is started, that should go away -- but is

> an indication that their little bodies need help!

> When normal, healthy people say " I feel like I'm coming down with

> something " I'm reminded that that's the way Katy felt every single day

> of her life before we started IVIG. It helped me to be more patient

> with her aches and pains.

>

>

>

> > And now the past two days getting passed around from one Dr to the

other

>

> One of the best things we ever did with Katy was to settle the question

> of who was in charge of her care. It took us several years to find

that

> doctor. When we found a pediatrician who loved Katy and had her best

> interest at heart, and I composed a letter to her and then sat

> down and met with her and settled the issue.

>

> It went something like this:

>

> We feel that it is imperative that someone who loves and cares for Katy

> be in charge of her health care. We want what is absolutely best for

> her, and it's not best for her to be cared for by immunologist who only

> see her twice a year -- when you see her sometimes weekly. We would

> like for you to be her ONLY doctor. We would like for you to help us

> make wise decisions for her care. We will see any specialist that you

> recommend -- but they can only report back to you -- they cannot treat

> her without your permission and feedback. They cannot draw blood!

They

> cannot prescribe medication. They are to make all recommendations to

> you and you will make the final decisions. That way we will have

> coordinated care and YOU will be that coordinator -- not us!

>

> I can't tell you how much that helped me. I felt totally safe with

this

> doctor and when I disagreed with her -- she listened. But for the most

> part I could turn the " medical " stuff over to her. She proved to be an

> excellent doctor and friend through this tough time. She spent her

> sabbaticals at the NIH learning about PIDD even though Katy was her

only

> PIDD patient. She was just an excellent doctor and I know that God was

> blessing us with her. She was the one who ultimately diagnosed Katy

and

> she was the one who guided through those rough years of beginning

> treatment, etc.

>

> We need a vacation I think.

>

> Sorry, but you have to take the kids with you!!! Vacations were

> nightmares for us. But then again -- they were totally worth it.

>

>

> Again, hats off to you all that seem to just

> > effortlessly glide through all of this.

>

> We glide because we've been sandpapered by the hard days.

>

> You seem to make it all seem

> > second nature. I hope to get to that point at some point.

> >

>

> You will! And may God bless you on your journey,

>

> In His service,

> dale

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

I wanted to mention something that worked for our son Conner, who also was

orally defensive when he was young. He really struggled with taking oral meds

and in his case we found that pills actually were better for him than liquids,

as he is very sensitive to smells and tastes. We practiced with having him

swallow mini M & M's and easily moved on to small sugar-coated pills ( Advil when

needed-not the store brand). His is now our best pill taker, he can swallow a

handful at a time (which was a good thing during transplant)! I'm not sure if

this is the best idea for all kids who have trouble taking meds, but it was

magic for Conner!

Take care,

(NEMO carrier)

Mom to Hayden (13-unknown PID)

Evan (13-unknown PID)

Conner (13-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

We also used skittle and putting it in pudding or ice cream and swallowing. Also

using a thick drink can help. Cold in our case works better. My son learned to

swallow pills at about 3 so it can be done.

BARBIE

Re: Re: ?????

I wanted to mention something that worked for our son Conner, who also was

orally defensive when he was young. He really struggled with taking oral meds

and in his case we found that pills actually were better for him than liquids,

as he is very sensitive to smells and tastes. We practiced with having him

swallow mini M & M's and easily moved on to small sugar-coated pills ( Advil when

needed-not the store brand). His is now our best pill taker, he can swallow a

handful at a time (which was a good thing during transplant)! I'm not sure if

this is the best idea for all kids who have trouble taking meds, but it was

magic for Conner!

Take care,

(NEMO carrier)

Mom to Hayden (13-unknown PID)

Evan (13-unknown PID)

Conner (13-NEMO; transplanted 8/17/07)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge. org/visit/ smithkids

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi Deska,

My husband is rarely able to come to appointments as well which has made it

harder for him to understand at times. Our kids have that in between things

sometimes. They are not exactly truly sick, but they are not well either and

have vague complaints that are hard to figure out (like the body pains).

We have the same problem as you where we have to play the " who is going to

treat the issue game " . Everyone is trying not to step on every other doctor's

toes so we bounce around from doctor to doctor. I sometimes start my doctor

calls with " I was not sure which doctor to call so I am starting with you. "

I think we all have glide points and points that we are stuck in that yucky

place you are feeling. You just have to hope that the glide is coming soon.

Re: Re: ?????

Hi Deska,

I read that last paragraph below and it resonated with me. My little one has

what I consider a milder PIDD as well and a host of other stuff and my older one

has other diagnoses and I completely understand how you are feeling. I work

full time as well and I try to keep our lives " normal " . " Normal " kids do not go

to the doctor once a week or so, ask for their inhaler because they can't breath

at 3 years old, and don't know exactly what order an exam is done in. The

thing is, as time goes on it is our normal. It is overwhelming of course, but

sometimes it is okay. I also understand not having family support. My MIL has

no idea how sick my daughters are and insist on doing things that will harm them

(like give a dairy allergic child frosting that has butter and milk in it). I

have to be with my children with her and this is over two years of this

nonsense.

I hope you have felt heard by the responses. Hang in there, you sound like you

are doing a great job.

I know my kids could be worse, but this stuff can get so overwhelming

when I am trying to work full time, and keep their lives as " normal "

as possible, as the Dr's haven't said to limit their activities, and

they are still playing baseball, etc as much as they can and doing

school as much as they can. Winter sports don't go over well for my

little guy, b/c generally he's too sick in the winter to participate.

So my springs are so jammed packed and now working/ball schedules and

now all of these appts I've just been so overwhelmed by all of it and

not getting much support from my mom ... and my husband thinks it's

all sort of " odd " he's not sure what he believes as far as diagnosis

goes just yet.

Thanks for the replies today though, I do appreciate it!

Deska

> > > I joined this group thinking it was supposed to be for

> > support. I have

> > > posted a few times and gotten no reply. I realize that my kids

aren't

> > > as sick as some of the others, but none the less, do have similar

> > things.

> > > We have had difficulties with stuff their whole lives, and it

has been

> > > frustrating trying to get the Dr's here in GA to listen to our

> > > concerns. No one would test them, even after me asking them to, for

> > > any kind of immune deficiency. I have asked them a few times

over the

> > > years and they never would. So once we got our diagnosis last month,

> > > and I found this group, I thought it would be a good release.

And then

> > > when I never get any replies, it is just discouraging. Like I

said, I

> > > know my kids aren't as sick as some of your kids are, but they

do have

> > > a PID, and it is all new and scary for us still. It seems that not

> > > many people in GA even know about this, and we are the first in our

> > > school to have this. I am having to walk the school system through

> > > everything and school them about it all. My kids have missed a

lot of

> > > school, my 6yr old 31 days, my 10 yr old 20 days, and we are

trying to

> > > get 504's.

> > >

> > > If you guys don't think I need to be a part of your group, then I

> > > understand, but can you direct me to another board? I do need a

> > > support group where I can vent and talk and learn about this

stuff. I

> > > have questions and concerns and fears like everyone else with a new

> > > diagnosis does. Through all of our stuff, tracheomalacia, heart

> > > murmur, reflux, recurrent croup that is now asthma, recurrent ear

> > > infections, etc I have had to learn about stuff and cope, and I just

> > > need a place where I can find some support.

> > >

> > >

> > >

> > >

> > >

> > >

> > > When everything seems to be going against you, remember the airplane

> > takes off against the wind, not with it.

> > > --Henry Ford

> > >

> > > ------------ --------- --------- ---

> > > Be a better friend, newshound, and know-it-all with Mobile.

> > Try it now.

> > >

> > >

[Guest guest]

Hi Dale,

I understand what you are saying about it being a misnomer. I guess when I

said my daughter is milder for me it meant that she is not constantly in the

hospital and she is able to be at a school. There is such a wide range of ways

that PIDD affects each individual, that though it has a large impact on us,

compared to other children on this group she is not as severe.

Re: Re: ?????

from Dale, Mom to Katy, CVID, married and grown (almost 24!)

just some random thoughts.

I don't understand the comments about having milder PIDD. I mean, I

understand what you mean -- but I believe it's a misnomer. Katy was

never hospitalized, never critically ill, so I guess she had a milder

PIDD, but in actuality her pain was constant, her infections one right

after another and parenting her was a full time job. There was never a

time during the rough years when I felt that she had a milder PIDD.

Parenting a PIDD kid is tough stuff. Now, there's a lot of parents on

this site whose children are going through multiple diagnosis. Don't

get that confused with PIDD.

> They complain all the time of headaches and stomach pain, and we can't

> pinpoint anything " wrong " and they are just " tired " and grumpy most of

> the time before other kids are.

The best way I can describe what is going on is this:

A person with a normal immune system kills germs before they set up

infection. It's rare for them to get an infection -- but when they do

-- they call it " being sick. " A person with CVID or hypogam doesn't

even know that that germ is in the body until it has set up shop and

multiplied enough to notify the killer-T cells. Therefore they are

" sick " all the time. Their bodies are fighting germs AFTER they have

set up infections (if they have t-cells in tact). IgG causes the body

to prepare for and prevent infections. With low IgG - their is no

preventive stuff going on. All the body can produce is attack after the

fact. So.... for a person walking around with CVID, they are currently

fighting what other people would call " sickness " every single day of

their lives. Their muscles ache, their bones hurt, their eyes hurt,

their tummies hurt, they feel fatigued and crampy and cranky all the

time. Once IgG replacement is started, that should go away -- but is

an indication that their little bodies need help!

When normal, healthy people say " I feel like I'm coming down with

something " I'm reminded that that's the way Katy felt every single day

of her life before we started IVIG. It helped me to be more patient

with her aches and pains.

> And now the past two days getting passed around from one Dr to the other

One of the best things we ever did with Katy was to settle the question

of who was in charge of her care. It took us several years to find that

doctor. When we found a pediatrician who loved Katy and had her best

interest at heart, and I composed a letter to her and then sat

down and met with her and settled the issue.

It went something like this:

We feel that it is imperative that someone who loves and cares for Katy

be in charge of her health care. We want what is absolutely best for

her, and it's not best for her to be cared for by immunologist who only

see her twice a year -- when you see her sometimes weekly. We would

like for you to be her ONLY doctor. We would like for you to help us

make wise decisions for her care. We will see any specialist that you

recommend -- but they can only report back to you -- they cannot treat

her without your permission and feedback. They cannot draw blood! They

cannot prescribe medication. They are to make all recommendations to

you and you will make the final decisions. That way we will have

coordinated care and YOU will be that coordinator -- not us!

I can't tell you how much that helped me. I felt totally safe with this

doctor and when I disagreed with her -- she listened. But for the most

part I could turn the " medical " stuff over to her. She proved to be an

excellent doctor and friend through this tough time. She spent her

sabbaticals at the NIH learning about PIDD even though Katy was her only

PIDD patient. She was just an excellent doctor and I know that God was

blessing us with her. She was the one who ultimately diagnosed Katy and

she was the one who guided through those rough years of beginning

treatment, etc.

We need a vacation I think.

Sorry, but you have to take the kids with you!!! Vacations were

nightmares for us. But then again -- they were totally worth it.

Again, hats off to you all that seem to just

> effortlessly glide through all of this.

We glide because we've been sandpapered by the hard days.

You seem to make it all seem

> second nature. I hope to get to that point at some point.

>

You will! And may God bless you on your journey,

In His service,

dale

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

---

Deska,

I guess I should have emailed you privately, since Im responding to

all your posts:), Ive been gone camping for a couple weeks. But, maybe

one of the other new moms wouldnt know this, so I'll go ahead and post

it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES

qualify a child for MAW. We went last yr for my daughter, who is now

ten, with CVID/asthma. We went to Give Kids the World Village in

Kissimee, which is way too awesome to believe, and Disney. It was a

MUCH needed break. We hadnt vacationed since before our youngest son

was born, and he was five last yr when we went. This yr, our 8 yr old

son has asked for his Wish. We are going to a resort with a Pirate

Treasure hunt, a pirate dinner theatre, and to Universal studios.(he's

a big jack sparrow fan:) We leave next Friday.....we SO need this

vacation, its been a long, tough winter. MAW covers everything,

flight, hotel, food, tickets, rental vehicle. Expense check to eat

out/etc. It is not based on your income, its based on y our childs dx.

You can go online and fill out forms, or you can call your closest

office. They will contact your dr, who only needs to fill out an easy

form, basically checking boxes stating your child is dx'd with immune

deficiency. Its a very easy process.

HTH a little,

valarie

mom of three w/CVID

In , " Deska " <deska66@...> wrote:

>

> Dale,

>

> Thanks so much for all of your comments. It makes a lot of sense and

> puts things into a different perspective. And believe me, I meant ALL

> of us when I said " we need a vacation from all of this " the kids, us,

> everyone. We never go away without our kids. It is rare that we go out

> to eat dinner without our boys, much less a vacation! (I think the

> only time we've ever spent away from them was one night for our

> anniversary 2 years ago)

>

> I recently changed pediatricians and I sat down and had a talk with

> the practice when I changed asking them who I was supposed to meet

> with when the kids were sick, and they felt it would be them, but now

> that we have hit our first " hurdle " so to speak, it presents to be a

> problem. I am going to have to address this. The immunologist hasn't

> started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

> and she was hoping to avoid that and be able to do prophylactic

> antibiotics and get him through the summer and maybe get him healthier

> and stronger before winter got here. I guess only time and prayers

> will tell.

>

> I do appreciate your honesty about everything you've dealt with. It

> really was a good post and it will definitely help me to look at

> things a little differently.

>

>

> Deska

>

>

> >

> > from Dale, Mom to Katy, CVID, married and grown (almost 24!)

> >

> > just some random thoughts.

> >

> >

> > I don't understand the comments about having milder PIDD. I mean, I

> > understand what you mean -- but I believe it's a misnomer. Katy was

> > never hospitalized, never critically ill, so I guess she had a milder

> > PIDD, but in actuality her pain was constant, her infections one

right

> > after another and parenting her was a full time job. There was

never a

> > time during the rough years when I felt that she had a milder PIDD.

> > Parenting a PIDD kid is tough stuff. Now, there's a lot of

parents on

> > this site whose children are going through multiple diagnosis. Don't

> > get that confused with PIDD.

> >

> > > They complain all the time of headaches and stomach pain, and we

> can't

> > > pinpoint anything " wrong " and they are just " tired " and grumpy

> most of

> > > the time before other kids are.

> >

> > The best way I can describe what is going on is this:

> > A person with a normal immune system kills germs before they set up

> > infection. It's rare for them to get an infection -- but when

they do

> > -- they call it " being sick. " A person with CVID or hypogam

doesn't

> > even know that that germ is in the body until it has set up shop and

> > multiplied enough to notify the killer-T cells. Therefore they are

> > " sick " all the time. Their bodies are fighting germs AFTER they have

> > set up infections (if they have t-cells in tact). IgG causes the

body

> > to prepare for and prevent infections. With low IgG - their is no

> > preventive stuff going on. All the body can produce is attack after

> the

> > fact. So.... for a person walking around with CVID, they are

currently

> > fighting what other people would call " sickness " every single day of

> > their lives. Their muscles ache, their bones hurt, their eyes hurt,

> > their tummies hurt, they feel fatigued and crampy and cranky all the

> > time. Once IgG replacement is started, that should go away --

but is

> > an indication that their little bodies need help!

> > When normal, healthy people say " I feel like I'm coming down with

> > something " I'm reminded that that's the way Katy felt every

single day

> > of her life before we started IVIG. It helped me to be more patient

> > with her aches and pains.

> >

> >

> >

> > > And now the past two days getting passed around from one Dr to the

> other

> >

> > One of the best things we ever did with Katy was to settle the

question

> > of who was in charge of her care. It took us several years to find

> that

> > doctor. When we found a pediatrician who loved Katy and had her best

> > interest at heart, and I composed a letter to her and then sat

> > down and met with her and settled the issue.

> >

> > It went something like this:

> >

> > We feel that it is imperative that someone who loves and cares for

Katy

> > be in charge of her health care. We want what is absolutely best for

> > her, and it's not best for her to be cared for by immunologist who

only

> > see her twice a year -- when you see her sometimes weekly. We would

> > like for you to be her ONLY doctor. We would like for you to help us

> > make wise decisions for her care. We will see any specialist that

you

> > recommend -- but they can only report back to you -- they cannot

treat

> > her without your permission and feedback. They cannot draw blood!

> They

> > cannot prescribe medication. They are to make all

recommendations to

> > you and you will make the final decisions. That way we will have

> > coordinated care and YOU will be that coordinator -- not us!

> >

> > I can't tell you how much that helped me. I felt totally safe with

> this

> > doctor and when I disagreed with her -- she listened. But for the

most

> > part I could turn the " medical " stuff over to her. She proved to

be an

> > excellent doctor and friend through this tough time. She spent her

> > sabbaticals at the NIH learning about PIDD even though Katy was her

> only

> > PIDD patient. She was just an excellent doctor and I know that

God was

> > blessing us with her. She was the one who ultimately diagnosed Katy

> and

> > she was the one who guided through those rough years of beginning

> > treatment, etc.

> >

> > We need a vacation I think.

> >

> > Sorry, but you have to take the kids with you!!! Vacations were

> > nightmares for us. But then again -- they were totally worth it.

> >

> >

> > Again, hats off to you all that seem to just

> > > effortlessly glide through all of this.

> >

> > We glide because we've been sandpapered by the hard days.

> >

> > You seem to make it all seem

> > > second nature. I hope to get to that point at some point.

> > >

> >

> > You will! And may God bless you on your journey,

> >

> > In His service,

> > dale

> >

>

[Guest guest]

valerie --

my email is deska66@...

feel free to email there anytime

Re: ?????

---

Deska,

I guess I should have emailed you privately, since Im responding to

all your posts:), Ive been gone camping for a couple weeks. But, maybe

one of the other new moms wouldnt know this, so I'll go ahead and post

it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES

qualify a child for MAW. We went last yr for my daughter, who is now

ten, with CVID/asthma. We went to Give Kids the World Village in

Kissimee, which is way too awesome to believe, and Disney. It was a

MUCH needed break. We hadnt vacationed since before our youngest son

was born, and he was five last yr when we went. This yr, our 8 yr old

son has asked for his Wish. We are going to a resort with a Pirate

Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s

a big jack sparrow fan:) We leave next Friday.....we SO need this

vacation, its been a long, tough winter. MAW covers everything,

flight, hotel, food, tickets, rental vehicle. Expense check to eat

out/etc. It is not based on your income, its based on y our childs dx.

You can go online and fill out forms, or you can call your closest

office. They will contact your dr, who only needs to fill out an easy

form, basically checking boxes stating your child is dx'd with immune

deficiency. Its a very easy process.

HTH a little,

valarie

mom of three w/CVID

In groups (DOT) com, " Deska " <deska66@... > wrote:

>

> Dale,

>

> Thanks so much for all of your comments. It makes a lot of sense and

> puts things into a different perspective. And believe me, I meant ALL

> of us when I said " we need a vacation from all of this " the kids, us,

> everyone. We never go away without our kids. It is rare that we go out

> to eat dinner without our boys, much less a vacation! (I think the

> only time we've ever spent away from them was one night for our

> anniversary 2 years ago)

>

> I recently changed pediatricians and I sat down and had a talk with

> the practice when I changed asking them who I was supposed to meet

> with when the kids were sick, and they felt it would be them, but now

> that we have hit our first " hurdle " so to speak, it presents to be a

> problem. I am going to have to address this. The immunologist hasn't

> started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

> and she was hoping to avoid that and be able to do prophylactic

> antibiotics and get him through the summer and maybe get him healthier

> and stronger before winter got here. I guess only time and prayers

> will tell.

>

> I do appreciate your honesty about everything you've dealt with. It

> really was a good post and it will definitely help me to look at

> things a little differently.

>

>

> Deska

>

>

> >

> > from Dale, Mom to Katy, CVID, married and grown (almost 24!)

> >

> > just some random thoughts.

> >

> >

> > I don't understand the comments about having milder PIDD. I mean, I

> > understand what you mean -- but I believe it's a misnomer. Katy was

> > never hospitalized, never critically ill, so I guess she had a milder

> > PIDD, but in actuality her pain was constant, her infections one

right

> > after another and parenting her was a full time job. There was

never a

> > time during the rough years when I felt that she had a milder PIDD.

> > Parenting a PIDD kid is tough stuff. Now, there's a lot of

parents on

> > this site whose children are going through multiple diagnosis. Don't

> > get that confused with PIDD.

> >

> > > They complain all the time of headaches and stomach pain, and we

> can't

> > > pinpoint anything " wrong " and they are just " tired " and grumpy

> most of

> > > the time before other kids are.

> >

> > The best way I can describe what is going on is this:

> > A person with a normal immune system kills germs before they set up

> > infection. It's rare for them to get an infection -- but when

they do

> > -- they call it " being sick. " A person with CVID or hypogam

doesn't

> > even know that that germ is in the body until it has set up shop and

> > multiplied enough to notify the killer-T cells. Therefore they are

> > " sick " all the time. Their bodies are fighting germs AFTER they have

> > set up infections (if they have t-cells in tact). IgG causes the

body

> > to prepare for and prevent infections. With low IgG - their is no

> > preventive stuff going on. All the body can produce is attack after

> the

> > fact. So.... for a person walking around with CVID, they are

currently

> > fighting what other people would call " sickness " every single day of

> > their lives. Their muscles ache, their bones hurt, their eyes hurt,

> > their tummies hurt, they feel fatigued and crampy and cranky all the

> > time. Once IgG replacement is started, that should go away --

but is

> > an indication that their little bodies need help!

> > When normal, healthy people say " I feel like I'm coming down with

> > something " I'm reminded that that's the way Katy felt every

single day

> > of her life before we started IVIG. It helped me to be more patient

> > with her aches and pains.

> >

> >

> >

> > > And now the past two days getting passed around from one Dr to the

> other

> >

> > One of the best things we ever did with Katy was to settle the

question

> > of who was in charge of her care. It took us several years to find

> that

> > doctor. When we found a pediatrician who loved Katy and had her best

> > interest at heart, and I composed a letter to her and then sat

> > down and met with her and settled the issue.

> >

> > It went something like this:

> >

> > We feel that it is imperative that someone who loves and cares for

Katy

> > be in charge of her health care. We want what is absolutely best for

> > her, and it's not best for her to be cared for by immunologist who

only

> > see her twice a year -- when you see her sometimes weekly. We would

> > like for you to be her ONLY doctor. We would like for you to help us

> > make wise decisions for her care. We will see any specialist that

you

> > recommend -- but they can only report back to you -- they cannot

treat

> > her without your permission and feedback. They cannot draw blood!

> They

> > cannot prescribe medication. They are to make all

recommendations to

> > you and you will make the final decisions. That way we will have

> > coordinated care and YOU will be that coordinator -- not us!

> >

> > I can't tell you how much that helped me. I felt totally safe with

> this

> > doctor and when I disagreed with her -- she listened. But for the

most

> > part I could turn the " medical " stuff over to her. She proved to

be an

> > excellent doctor and friend through this tough time. She spent her

> > sabbaticals at the NIH learning about PIDD even though Katy was her

> only

> > PIDD patient. She was just an excellent doctor and I know that

God was

> > blessing us with her. She was the one who ultimately diagnosed Katy

> and

> > she was the one who guided through those rough years of beginning

> > treatment, etc.

> >

> > We need a vacation I think.

> >

> > Sorry, but you have to take the kids with you!!! Vacations were

> > nightmares for us. But then again -- they were totally worth it.

> >

> >

> > Again, hats off to you all that seem to just

> > > effortlessly glide through all of this.

> >

> > We glide because we've been sandpapered by the hard days.

> >

> > You seem to make it all seem

> > > second nature. I hope to get to that point at some point.

> > >

> >

> > You will! And may God bless you on your journey,

> >

> > In His service,

> > dale

> >

>

[Guest guest]

Actually we have tried 2x and have not gotten a MAW and Lucas has all of the

same diagnosis as your kids and more. I have no explantation except that they

do not consider CVID to be life threatening.He is stable on the gammaglobulin

and has been kept out of the hospital most of his life. I DO NOT go to the ER

with him and we have worked behind the scenes to keep him out. ( I do more than

most at home because I am a PEDS nurse. It makes me very sad because he truly

deserves a wish. BARBIE

Re: ?????

---

Deska,

I guess I should have emailed you privately, since Im responding to

all your posts:), Ive been gone camping for a couple weeks. But, maybe

one of the other new moms wouldnt know this, so I'll go ahead and post

it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES

qualify a child for MAW. We went last yr for my daughter, who is now

ten, with CVID/asthma. We went to Give Kids the World Village in

Kissimee, which is way too awesome to believe, and Disney. It was a

MUCH needed break. We hadnt vacationed since before our youngest son

was born, and he was five last yr when we went. This yr, our 8 yr old

son has asked for his Wish. We are going to a resort with a Pirate

Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s

a big jack sparrow fan:) We leave next Friday.....we SO need this

vacation, its been a long, tough winter. MAW covers everything,

flight, hotel, food, tickets, rental vehicle. Expense check to eat

out/etc. It is not based on your income, its based on y our childs dx.

You can go online and fill out forms, or you can call your closest

office. They will contact your dr, who only needs to fill out an easy

form, basically checking boxes stating your child is dx'd with immune

deficiency. Its a very easy process.

HTH a little,

valarie

mom of three w/CVID

In groups (DOT) com, " Deska " <deska66@... > wrote:

>

> Dale,

>

> Thanks so much for all of your comments. It makes a lot of sense and

> puts things into a different perspective. And believe me, I meant ALL

> of us when I said " we need a vacation from all of this " the kids, us,

> everyone. We never go away without our kids. It is rare that we go out

> to eat dinner without our boys, much less a vacation! (I think the

> only time we've ever spent away from them was one night for our

> anniversary 2 years ago)

>

> I recently changed pediatricians and I sat down and had a talk with

> the practice when I changed asking them who I was supposed to meet

> with when the kids were sick, and they felt it would be them, but now

> that we have hit our first " hurdle " so to speak, it presents to be a

> problem. I am going to have to address this. The immunologist hasn't

> started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

> and she was hoping to avoid that and be able to do prophylactic

> antibiotics and get him through the summer and maybe get him healthier

> and stronger before winter got here. I guess only time and prayers

> will tell.

>

> I do appreciate your honesty about everything you've dealt with. It

> really was a good post and it will definitely help me to look at

> things a little differently.

>

>

> Deska

>

>

> >

> > from Dale, Mom to Katy, CVID, married and grown (almost 24!)

> >

> > just some random thoughts.

> >

> >

> > I don't understand the comments about having milder PIDD. I mean, I

> > understand what you mean -- but I believe it's a misnomer. Katy was

> > never hospitalized, never critically ill, so I guess she had a milder

> > PIDD, but in actuality her pain was constant, her infections one

right

> > after another and parenting her was a full time job. There was

never a

> > time during the rough years when I felt that she had a milder PIDD.

> > Parenting a PIDD kid is tough stuff. Now, there's a lot of

parents on

> > this site whose children are going through multiple diagnosis. Don't

> > get that confused with PIDD.

> >

> > > They complain all the time of headaches and stomach pain, and we

> can't

> > > pinpoint anything " wrong " and they are just " tired " and grumpy

> most of

> > > the time before other kids are.

> >

> > The best way I can describe what is going on is this:

> > A person with a normal immune system kills germs before they set up

> > infection. It's rare for them to get an infection -- but when

they do

> > -- they call it " being sick. " A person with CVID or hypogam

doesn't

> > even know that that germ is in the body until it has set up shop and

> > multiplied enough to notify the killer-T cells. Therefore they are

> > " sick " all the time. Their bodies are fighting germs AFTER they have

> > set up infections (if they have t-cells in tact). IgG causes the

body

> > to prepare for and prevent infections. With low IgG - their is no

> > preventive stuff going on. All the body can produce is attack after

> the

> > fact. So.... for a person walking around with CVID, they are

currently

> > fighting what other people would call " sickness " every single day of

> > their lives. Their muscles ache, their bones hurt, their eyes hurt,

> > their tummies hurt, they feel fatigued and crampy and cranky all the

> > time. Once IgG replacement is started, that should go away --

but is

> > an indication that their little bodies need help!

> > When normal, healthy people say " I feel like I'm coming down with

> > something " I'm reminded that that's the way Katy felt every

single day

> > of her life before we started IVIG. It helped me to be more patient

> > with her aches and pains.

> >

> >

> >

> > > And now the past two days getting passed around from one Dr to the

> other

> >

> > One of the best things we ever did with Katy was to settle the

question

> > of who was in charge of her care. It took us several years to find

> that

> > doctor. When we found a pediatrician who loved Katy and had her best

> > interest at heart, and I composed a letter to her and then sat

> > down and met with her and settled the issue.

> >

> > It went something like this:

> >

> > We feel that it is imperative that someone who loves and cares for

Katy

> > be in charge of her health care. We want what is absolutely best for

> > her, and it's not best for her to be cared for by immunologist who

only

> > see her twice a year -- when you see her sometimes weekly. We would

> > like for you to be her ONLY doctor. We would like for you to help us

> > make wise decisions for her care. We will see any specialist that

you

> > recommend -- but they can only report back to you -- they cannot

treat

> > her without your permission and feedback. They cannot draw blood!

> They

> > cannot prescribe medication. They are to make all

recommendations to

> > you and you will make the final decisions. That way we will have

> > coordinated care and YOU will be that coordinator -- not us!

> >

> > I can't tell you how much that helped me. I felt totally safe with

> this

> > doctor and when I disagreed with her -- she listened. But for the

most

> > part I could turn the " medical " stuff over to her. She proved to

be an

> > excellent doctor and friend through this tough time. She spent her

> > sabbaticals at the NIH learning about PIDD even though Katy was her

> only

> > PIDD patient. She was just an excellent doctor and I know that

God was

> > blessing us with her. She was the one who ultimately diagnosed Katy

> and

> > she was the one who guided through those rough years of beginning

> > treatment, etc.

> >

> > We need a vacation I think.

> >

> > Sorry, but you have to take the kids with you!!! Vacations were

> > nightmares for us. But then again -- they were totally worth it.

> >

> >

> > Again, hats off to you all that seem to just

> > > effortlessly glide through all of this.

> >

> > We glide because we've been sandpapered by the hard days.

> >

> > You seem to make it all seem

> > > second nature. I hope to get to that point at some point.

> > >

> >

> > You will! And may God bless you on your journey,

> >

> > In His service,

> > dale

> >

>

[Guest guest]

--- Have you ever asked your dr what he puts on the form? I asked for

a copy of Savannah MAW form that was sent to our drs office, bc our

legal rep wanted it for the SSI case. It was very short, had boxes to

check, one of the boxes said, " immune dysfunction/deficiency " and that

box was checked. If your dr checks that box, it qualifies. That, at

least, is what our hospital social worker, and our wish manager at our

MAW office told me. maybe your dr isnt doing that?

valarie

In , Barbara Jimenez <mother5590@...> wrote:

>

> Actually we have tried 2x and have not gotten a MAW and Lucas has

all of the same diagnosis as your kids and more. I have no

explantation except that they do not consider CVID to be life

threatening.He is stable on the gammaglobulin and has been kept out of

the hospital most of his life. I DO NOT go to the ER with him and we

have worked behind the scenes to keep him out. ( I do more than most

at home because I am a PEDS nurse. It makes me very sad because he

truly deserves a wish. BARBIE

>

>

>

>

> Re: ?????

>

>

> ---

> Deska,

> I guess I should have emailed you privately, since Im responding to

> all your posts:), Ive been gone camping for a couple weeks. But, maybe

> one of the other new moms wouldnt know this, so I'll go ahead and post

> it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES

> qualify a child for MAW. We went last yr for my daughter, who is now

> ten, with CVID/asthma. We went to Give Kids the World Village in

> Kissimee, which is way too awesome to believe, and Disney. It was a

> MUCH needed break. We hadnt vacationed since before our youngest son

> was born, and he was five last yr when we went. This yr, our 8 yr old

> son has asked for his Wish. We are going to a resort with a Pirate

> Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s

> a big jack sparrow fan:) We leave next Friday.....we SO need this

> vacation, its been a long, tough winter. MAW covers everything,

> flight, hotel, food, tickets, rental vehicle. Expense check to eat

> out/etc. It is not based on your income, its based on y our childs dx.

> You can go online and fill out forms, or you can call your closest

> office. They will contact your dr, who only needs to fill out an easy

> form, basically checking boxes stating your child is dx'd with immune

> deficiency. Its a very easy process.

>

> HTH a little,

> valarie

> mom of three w/CVID

>

> In groups (DOT) com, " Deska " <deska66@ > wrote:

> >

> > Dale,

> >

> > Thanks so much for all of your comments. It makes a lot of sense and

> > puts things into a different perspective. And believe me, I meant ALL

> > of us when I said " we need a vacation from all of this " the kids, us,

> > everyone. We never go away without our kids. It is rare that we go out

> > to eat dinner without our boys, much less a vacation! (I think the

> > only time we've ever spent away from them was one night for our

> > anniversary 2 years ago)

> >

> > I recently changed pediatricians and I sat down and had a talk with

> > the practice when I changed asking them who I was supposed to meet

> > with when the kids were sick, and they felt it would be them, but now

> > that we have hit our first " hurdle " so to speak, it presents to be a

> > problem. I am going to have to address this. The immunologist hasn't

> > started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

> > and she was hoping to avoid that and be able to do prophylactic

> > antibiotics and get him through the summer and maybe get him healthier

> > and stronger before winter got here. I guess only time and prayers

> > will tell.

> >

> > I do appreciate your honesty about everything you've dealt with. It

> > really was a good post and it will definitely help me to look at

> > things a little differently.

> >

> >

> > Deska

> >

> >

> > >

> > > from Dale, Mom to Katy, CVID, married and grown (almost 24!)

> > >

> > > just some random thoughts.

> > >

> > >

> > > I don't understand the comments about having milder PIDD. I mean, I

> > > understand what you mean -- but I believe it's a misnomer. Katy

was

> > > never hospitalized, never critically ill, so I guess she had a

milder

> > > PIDD, but in actuality her pain was constant, her infections one

> right

> > > after another and parenting her was a full time job. There was

> never a

> > > time during the rough years when I felt that she had a milder PIDD.

> > > Parenting a PIDD kid is tough stuff. Now, there's a lot of

> parents on

> > > this site whose children are going through multiple diagnosis.

Don't

> > > get that confused with PIDD.

> > >

> > > > They complain all the time of headaches and stomach pain, and we

> > can't

> > > > pinpoint anything " wrong " and they are just " tired " and grumpy

> > most of

> > > > the time before other kids are.

> > >

> > > The best way I can describe what is going on is this:

> > > A person with a normal immune system kills germs before they set up

> > > infection. It's rare for them to get an infection -- but when

> they do

> > > -- they call it " being sick. " A person with CVID or hypogam

> doesn't

> > > even know that that germ is in the body until it has set up shop

and

> > > multiplied enough to notify the killer-T cells. Therefore they are

> > > " sick " all the time. Their bodies are fighting germs AFTER they

have

> > > set up infections (if they have t-cells in tact). IgG causes the

> body

> > > to prepare for and prevent infections. With low IgG - their is no

> > > preventive stuff going on. All the body can produce is attack after

> > the

> > > fact. So.... for a person walking around with CVID, they are

> currently

> > > fighting what other people would call " sickness " every single

day of

> > > their lives. Their muscles ache, their bones hurt, their eyes

hurt,

> > > their tummies hurt, they feel fatigued and crampy and cranky all

the

> > > time. Once IgG replacement is started, that should go away --

> but is

> > > an indication that their little bodies need help!

> > > When normal, healthy people say " I feel like I'm coming down with

> > > something " I'm reminded that that's the way Katy felt every

> single day

> > > of her life before we started IVIG. It helped me to be more

patient

> > > with her aches and pains.

> > >

> > >

> > >

> > > > And now the past two days getting passed around from one Dr to the

> > other

> > >

> > > One of the best things we ever did with Katy was to settle the

> question

> > > of who was in charge of her care. It took us several years to find

> > that

> > > doctor. When we found a pediatrician who loved Katy and had her

best

> > > interest at heart, and I composed a letter to her and then

sat

> > > down and met with her and settled the issue.

> > >

> > > It went something like this:

> > >

> > > We feel that it is imperative that someone who loves and cares for

> Katy

> > > be in charge of her health care. We want what is absolutely

best for

> > > her, and it's not best for her to be cared for by immunologist who

> only

> > > see her twice a year -- when you see her sometimes weekly. We

would

> > > like for you to be her ONLY doctor. We would like for you to

help us

> > > make wise decisions for her care. We will see any specialist that

> you

> > > recommend -- but they can only report back to you -- they cannot

> treat

> > > her without your permission and feedback. They cannot draw blood!

> > They

> > > cannot prescribe medication. They are to make all

> recommendations to

> > > you and you will make the final decisions. That way we will have

> > > coordinated care and YOU will be that coordinator -- not us!

> > >

> > > I can't tell you how much that helped me. I felt totally safe with

> > this

> > > doctor and when I disagreed with her -- she listened. But for the

> most

> > > part I could turn the " medical " stuff over to her. She proved to

> be an

> > > excellent doctor and friend through this tough time. She spent her

> > > sabbaticals at the NIH learning about PIDD even though Katy was her

> > only

> > > PIDD patient. She was just an excellent doctor and I know that

> God was

> > > blessing us with her. She was the one who ultimately diagnosed Katy

> > and

> > > she was the one who guided through those rough years of beginning

> > > treatment, etc.

> > >

> > > We need a vacation I think.

> > >

> > > Sorry, but you have to take the kids with you!!! Vacations were

> > > nightmares for us. But then again -- they were totally worth it.

> > >

> > >

> > > Again, hats off to you all that seem to just

> > > > effortlessly glide through all of this.

> > >

> > > We glide because we've been sandpapered by the hard days.

> > >

> > > You seem to make it all seem

> > > > second nature. I hope to get to that point at some point.

> > > >

> > >

> > > You will! And may God bless you on your journey,

> > >

> > > In His service,

> > > dale

> > >

> >

>

>

>

>

>

>

>

[Guest guest]

Well in all honesty, I wouldn't feel right trying to get a MAW for my boys at

this point in time. Knowing that neither of them are facing life threatening

illnesses (even though an asthma attack can be life threatening) I think that is

a different beast in itself. I, personally, just wouldn't feel right about

trying to do one for my boys at this point. But thanks for the heads up on it. I

know each of us all have kids with at least a PID and some with WAY more and I

think some would need this more than we would. Some of these kiddos have been

through A LOT from what I gather. Bless you all. Hugs and prayers everyday!!!

Deska

On May 21, 2008, at 7:58 PM, Barbara Jimenez <mother5590@...> wrote:

Actually we have tried 2x and have not gotten a MAW and Lucas has all of the

same diagnosis as your kids and more. I have no explantation except that they do

not consider CVID to be life threatening.He is stable on the gammaglobulin and

has been kept out of the hospital most of his life. I DO NOT go to the ER with

him and we have worked behind the scenes to keep him out. ( I do more than most

at home because I am a PEDS nurse. It makes me very sad because he truly

deserves a wish. BARBIE

Re: ?????

---

Deska,

I guess I should have emailed you privately, since Im responding to

all your posts:), Ive been gone camping for a couple weeks. But, maybe

one of the other new moms wouldnt know this, so I'll go ahead and post

it. Have you ever applied to Make a wish foundation? a dx of PIDD DOES

qualify a child for MAW. We went last yr for my daughter, who is now

ten, with CVID/asthma. We went to Give Kids the World Village in

Kissimee, which is way too awesome to believe, and Disney. It was a

MUCH needed break. We hadnt vacationed since before our youngest son

was born, and he was five last yr when we went. This yr, our 8 yr old

son has asked for his Wish. We are going to a resort with a Pirate

Treasure hunt, a pirate dinner theatre, and to Universal studios.(he' s

a big jack sparrow fan:) We leave next Friday.....we SO need this

vacation, its been a long, tough winter. MAW covers everything,

flight, hotel, food, tickets, rental vehicle. Expense check to eat

out/etc. It is not based on your income, its based on y our childs dx.

You can go online and fill out forms, or you can call your closest

office. They will contact your dr, who only needs to fill out an easy

form, basically checking boxes stating your child is dx'd with immune

deficiency. Its a very easy process.

HTH a little,

valarie

mom of three w/CVID

In groups (DOT) com, " Deska " <deska66@... > wrote:

>

> Dale,

>

> Thanks so much for all of your comments. It makes a lot of sense and

> puts things into a different perspective. And believe me, I meant ALL

> of us when I said " we need a vacation from all of this " the kids, us,

> everyone. We never go away without our kids. It is rare that we go out

> to eat dinner without our boys, much less a vacation! (I think the

> only time we've ever spent away from them was one night for our

> anniversary 2 years ago)

>

> I recently changed pediatricians and I sat down and had a talk with

> the practice when I changed asking them who I was supposed to meet

> with when the kids were sick, and they felt it would be them, but now

> that we have hit our first " hurdle " so to speak, it presents to be a

> problem. I am going to have to address this. The immunologist hasn't

> started Jayden on IVIG yet, we just got his diagnosis maybe 2mos ago,

> and she was hoping to avoid that and be able to do prophylactic

> antibiotics and get him through the summer and maybe get him healthier

> and stronger before winter got here. I guess only time and prayers

> will tell.

>

> I do appreciate your honesty about everything you've dealt with. It

> really was a good post and it will definitely help me to look at

> things a little differently.

>

>

> Deska

>

>

> >

> > from Dale, Mom to Katy, CVID, married and grown (almost 24!)

> >

> > just some random thoughts.

> >

> >

> > I don't understand the comments about having milder PIDD. I mean, I

> > understand what you mean -- but I believe it's a misnomer. Katy was

> > never hospitalized, never critically ill, so I guess she had a milder

> > PIDD, but in actuality her pain was constant, her infections one

right

> > after another and parenting her was a full time job. There was

never a

> > time during the rough years when I felt that she had a milder PIDD.

> > Parenting a PIDD kid is tough stuff. Now, there's a lot of

parents on

> > this site whose children are going through multiple diagnosis. Don't

> > get that confused with PIDD.

> >

> > > They complain all the time of headaches and stomach pain, and we

> can't

> > > pinpoint anything " wrong " and they are just " tired " and grumpy

> most of

> > > the time before other kids are.

> >

> > The best way I can describe what is going on is this:

> > A person with a normal immune system kills germs before they set up

> > infection. It's rare for them to get an infection -- but when

they do

> > -- they call it " being sick. " A person with CVID or hypogam

doesn't

> > even know that that germ is in the body until it has set up shop and

> > multiplied enough to notify the killer-T cells. Therefore they are

> > " sick " all the time. Their bodies are fighting germs AFTER they have

> > set up infections (if they have t-cells in tact). IgG causes the

body

> > to prepare for and prevent infections. With low IgG - their is no

> > preventive stuff going on. All the body can produce is attack after

> the

> > fact. So.... for a person walking around with CVID, they are

currently

> > fighting what other people would call " sickness " every single day of

> > their lives. Their muscles ache, their bones hurt, their eyes hurt,

> > their tummies hurt, they feel fatigued and crampy and cranky all the

> > time. Once IgG replacement is started, that should go away --

but is

> > an indication that their little bodies need help!

> > When normal, healthy people say " I feel like I'm coming down with

> > something " I'm reminded that that's the way Katy felt every

single day

> > of her life before we started IVIG. It helped me to be more patient

> > with her aches and pains.

> >

> >

> >

> > > And now the past two days getting passed around from one Dr to the

> other

> >

> > One of the best things we ever did with Katy was to settle the

question

> > of who was in charge of her care. It took us several years to find

> that

> > doctor. When we found a pediatrician who loved Katy and had her best

> > interest at heart, and I composed a letter to her and then sat

> > down and met with her and settled the issue.

> >

> > It went something like this:

> >

> > We feel that it is imperative that someone who loves and cares for

Katy

> > be in charge of her health care. We want what is absolutely best for

> > her, and it's not best for her to be cared for by immunologist who

only

> > see her twice a year -- when you see her sometimes weekly. We would

> > like for you to be her ONLY doctor. We would like for you to help us

> > make wise decisions for her care. We will see any specialist that

you

> > recommend -- but they can only report back to you -- they cannot

treat

> > her without your permission and feedback. They cannot draw blood!

> They

> > cannot prescribe medication. They are to make all

recommendations to

> > you and you will make the final decisions. That way we will have

> > coordinated care and YOU will be that coordinator -- not us!

> >

> > I can't tell you how much that helped me. I felt totally safe with

> this

> > doctor and when I disagreed with her -- she listened. But for the

most

> > part I could turn the " medical " stuff over to her. She proved to

be an

> > excellent doctor and friend through this tough time. She spent her

> > sabbaticals at the NIH learning about PIDD even though Katy was her

> only

> > PIDD patient. She was just an excellent doctor and I know that

God was

> > blessing us with her. She was the one who ultimately diagnosed Katy

> and

> > she was the one who guided through those rough years of beginning

> > treatment, etc.

> >

> > We need a vacation I think.

> >

> > Sorry, but you have to take the kids with you!!! Vacations were

> > nightmares for us. But then again -- they were totally worth it.

> >

> >

> > Again, hats off to you all that seem to just

> > > effortlessly glide through all of this.

> >

> > We glide because we've been sandpapered by the hard days.

> >

> > You seem to make it all seem

> > > second nature. I hope to get to that point at some point.

> > >

> >

> > You will! And may God bless you on your journey,

> >

> > In His service,

> > dale

> >

>